Official Sections CTRMS ISVCA IPITA IPTA ISODP IRTA IXA SPLIT TID


Presidential Message

Dear All

It is with sadness that I share the news that our first IPTA president John Najarian has died. We would like to celebrate his life and the difference he made to pediatric transplantation and send condolences to his family and colleagues (see his obituary – R. Fine). A really amazing man!

I trust you are all getting used to the new ‘normal’ and have all started your transplant programs again in those centres that stopped transplantation during the COVID pandemic. In South Africa, we are just emerging from a very tight 6-month lockdown this week, but watch the second wave in the Northern Hemisphere with a sense of despair – we really need a vaccine!

On the positive front, we have appointed our new committee members and it is great to have new ideas as the committee teams are already hard at work.

Our next highlights are the appointment of new candidates for Councilors and Officers positions beginning May 2021 and urge those interested in serving IPTA and the pediatric transplant community to apply before 30 November 2020.

We have just attended the TTS 2020 Virtual Congress which had an exciting separate pediatric track organized by Catherin Parker and Lars Pape with help from Katherine Twombley and Jonathan Johnson. This first of its kind meeting for TTS was entirely virtual and across 3 time zones - Montreal, Frankfurt and Seoul - enabling people from all over the world to participate (see our update from Gabriel Gondolesi).

We watched this congress with interest as we continue to plan our own Congress IPTA 2021, Prague Sept 11-14 and are still hoping to have a live meeting at least in some format. People enjoyed the TTS2020 congress but all agreed at a virtual networking event, that nothing quite beats drinking a Czech beer or Becherovka liquor in person with colleagues!

We also congratulate Marcelo Cantarovich on being elected TTS President as he takes over from Mehmet Haberal, and look forward to working with him.

Our Allied Health Professionals committee has changed their name to Allied Health and Nursing Professionals (AHNP) Committee and they have provided a charming story about Camp Chihopi. Please look out for their professional practice survey.

Our ‘Meet the Greats’ include Richard Trompeter and Steven Webber as pioneers in our field.

Our Pediatric Transplantation Journal (PETR) has had a great year with the impact factor once again increasing to 1.425 – congratulations to the editors and all those who participate with manuscripts as well as reviewing.

Look out for our Literary Review from the IPTA Education Committee and our Mentoring initiative.

We have started an international initiative around Advocacy for Children in Organ Allocation led by Evelyn Hsu, Stephen Marks and myself and would really appreciate a few minutes of your time answering a survey as we gather information about Pediatric Transplantation around the world.

Stay safe and thanks for all you do for the pediatric transplant community.

Best wishes

Mignon McCulloch
IPTA President

IPTA 2020

CALL FOR NOMINATIONS

Do you wish to serve IPTA and the global pediatric transplant community? Or do you know someone who you believe is a pioneer in the field? The IPTA Nominations Committee is seeking qualified candidates to be considered for open Councilor and Officer positions beginning in May 2021.

All applications will be reviewed by the IPTA Nominations Committee, who will present a final slate of candidate Councilors and Officers to the IPTA membership for the 2021 election.

The IPTA Nominations Committee welcomes nominations and applications from anyone who has been an IPTA member in good standing for at least 1 year.  Service to IPTA on committees or special activities relevant to the society is an asset.

The deadline for online submission of applications is November 30, 2020.

Application Procedure

Applications for open Councilor and Officer positions must be submitted using the online Call for Nominations Application. Completed applications must be submitted by November 30, 2020.

You will need the following before proceeding to the application:

  • Briefly describe your role as it relates to pediatric transplantation (Limit 50 words)
  • Please list any involvement or activities you have participated in with IPTA
  • Briefly describe your reason for applying for a leadership position at this time (Limit 100 words)
  • Nominee Statement (300 words): Identify and describe a key issue addressing a challenge in pediatric transplantation and why you believe that it is an important issue for IPTA to address. Please note that this will be used in materials sent to the IPTA membership.

To be uploaded on the site (pdf or Word documents):

  • Two letters of support from two members in good standing of IPTA.
  • Curriculum Vitae

Applicants will be notified in December 2020 as to the status of their acceptance to the slate of Councilors and Officers for the 2021 election.

Click here to find out more and to nominate

Case Study

Allied Health & Nursing Professionals Committee



Virtual S’mores: Camp Chihopi in the Time of COVID

For many children, summer includes days at the pool, playing with friends, special vacations and maybe attending summer camp - a rite of passage for many. Being away from home, meeting new friends, and participating in activities leads to the development of new skills and greater independence.  Some may think these experiences are unrealistic for children who are transplant recipients, but Camp Chihopi, created in 1995, has made that dream a reality. This annual event, through the Department of Transplant Surgery at UPMC Children’s Hospital of Pittsburgh, provides a non-medical environment that encourages campers to engage with peers of similar medical experiences within the setting of a summer camp. Chihopi provides an invaluable experience for young transplant recipients to learn skills to increase independence, build relationships with peers, improve self-esteem, and enhance understanding of their health, while participating in typical summer camp activities.

The summer of 2020 was going to be like the previous 25 summers – fun events, new and sustained friendships, making memories and being active in a beautiful camp setting. Then life changed dramatically for all with the COVID pandemic. Now what?

Faced with cancellations in every type of social encounter, it became evident that the safest plan was to cancel Chihopi 2020. Although we were becoming accustomed to cancellations, social distancing, masks, and virtual programming for school, meetings, and gathering with friends, it was still heartbreaking to cancel Chihopi. We had been hopeful that late summer might bring some normalcy, but adhering to current safety guidelines would be challenging with a camp environment that includes cabins of up to 12 campers and staff, a shared dining room, and close contact during activities. Following meetings with the Heart Camp leaders at Children’s Hospital, who were also planning a virtual camp, and internet research on other summer camps that were changing to a virtual platform, the Chihopi team began developing “V-CHOPI,” a virtual way to celebrate our friendships, connections, fun activities, and the spirit of Chihopi. About half of the usual group, 42 campers and 20 staff, participated in the week-long event.

Campers were invited to attend a 5-day event with specific programming that would take a virtual twist on favorite activities. Sitting around a campfire together and making S’mores wasn’t possible, but everyone could make their own campfires (cardboard paper towel rolls and colored tissue paper) and enjoy pre-made S’mores.  Water sports weren’t available, but “Floatie Friday“ provided a challenge to present their unique version of a water activity – which could be swimming in the bathtub with flippers and a snorkel! The campers’ creativity, imagination and enthusiasm were amazing! With current events in mind, the theme of camp was “Mask-erade.” Each morning, campers received an email with instructions that included their thoughts about the question for the day, pictures to post related to the theme of the day, and preparation for activities. The week before camp, campers received the Chihopi Camp Cube by snail mail with supplies, a camp T-shirt, and other camp necessities.  Two one-hour sessions, as recommended by national on-line camps, were scheduled and organized through Zoom. There were all-camp activities but campers were also divided into cabin groups for the afternoon session. Chihopi staff, including older transplant recipients and transplant team members, were also recruited and participated as session leaders.

V-Chihopi far exceeded our hopes for the event. We knew that campers would enjoy seeing each other, even virtually, and renewing friendships, but the strong connections, and the degree of openness and communication that occurred was unexpected. Each session had adult leadership from experienced camp staff and also one to two senior leaders to help facilitate discussions as needed. During activity sessions, campers would speak spontaneously about their medical experiences, peers, family and activities. One young camper remarked how his house “exploded” with alarms twice daily when it was time to take his medicine. This led to a long discussion about remembering to take medications and what strategies are used in their homes. In addition to taking meds, another theme was the bond they shared with other campers because of their transplant surgery. The campers discussed medical experiences from difficult times in the hospital to favorite nurses and tips in taking medicine that tasted “nasty.”  Listening to campers, and the staff who are transplant recipients, discuss shared experiences and the support they receive from each other validated this virtual experience. In some ways, the virtual format seemed to encourage more personal discussion. Campers also enjoyed getting to know each other better through the backdrop of the campers’ homes. They could meet siblings, were introduced to pets (including a pot belly pig that could do tricks on demand!), saw stuffed animal collections and participated in a back-yard birthday party. Chihopi had an international perspective with our camp friends from the School of Nursing at Keio University in Tokyo who facilitated an origami session. The students and their instructor were active participants during camp week, despite the 13 hour time difference!  “Ask the Transplant Team” was a fast hour of Q&A between the campers and team with insightful questions about transplant surgery to favorite ways to relax. Interestingly, the virtual format provided the ideal platform for this session, which had never been as successful at camp. With Zoom, the session became a more private interview and encouraged more discussion, positive exchange between campers and the team, and contributed to our understanding of each other because of our relationship through transplant.

This has been unforgettable summer in many ways. Although being together at Chihopi is what all the campers and staff hope for, it has become an opportunity to develop Chihopi as a virtual touchpoint throughout the year. Plans are being made for a holiday event, a planning session in the spring to engage the campers and staff for Chihopi 2021, and a virtual cabin orientation prior to camp. Rather than being only a place holder for “real” camp, V-Chopi strengthened the camp bond and is yet another experience the campers will have in common. Chihopi campers know that there are others with the same experiences and with whom they always have support and understanding. We learned that both virtual and real connections can be impactful.

Beverly Kosmach-Park
Director, Camp Chihopi

Publications Committee

Update

The IPTA Publications committee would like to reach out to IPTA members to support our activity in encouraging mentorship for more junior colleagues.

Publishing is often difficult for less experienced researchers, especially for those who work in structures where performing research and writing of publications are not considered a priority.

The International Pediatric Transplant Association (IPTA) promotes the involvement of junior career members into the scientific community. For this reason, IPTA would like to facilitate the access to research projects and publication by initializing a mentorship program.
IPTA would like advanced clinician and researchers to consider becoming a mentor.  We would like to propose different levels of mentorship, which one could engage in with a more junior colleague:

  1. The basic level of mentorship would be providing help with publication to non-native English speaker. The mentor will serve mainly as “proof reader”, i.e. will help with language corrections. Such help should not imply a substantial manuscript revision, therefore the mentor should not expect to share authorship of the paper and should only be acknowledged for her/his contribution
  2. The second option is that the mentor substantially contributes to the writing of the manuscript. As this is more demanding a shared authorship may be discussed with the mentee and her/his institution depending on the extent of the contribution.
  3. A third level of mentorship would involve the mentor already during project design and research development. At this higher level of mentorship, the mentor may also give advice to professional development of her/his mentee. In case this contribution should lead to publication, we would strongly advice that authorship should be shared
  4. In specific cases, mentorship could be an ongoing process, which could lead to a “visiting professorship” of the respective mentor at the mentee’s institution. This could include an active engagement of the mentor by providing educational webinars on e.g. “Manuscript writing”, “Designing and developing a research project”.

We are aware that the level of involvement may change over time and should be adjusted by mutual understanding between mentor and mentee to reach their expectations.

We would appreciate if senior IPTA members would be willing to provide mentorship at one of the levels indicated. Once you indicated your willingness to support the program, we would list your name, area of expertise and level of engagement you are willing to provide on IPTA’s website. If there are any further questions, please contact Anette Melk (melk.anette@mh-hannover.de).

Advocacy for Children in Organ Allocation

An International Initiative

The International Pediatric Transplant Association believes that it is important to represent the international community of members and the patients and the families they serve. By broadening our reach into advocacy, we can advance the cause of children and youth who stand to benefit from transplantation worldwide.

The International Advocacy group has the intention to survey the existing landscape of allocation for pediatric transplantation, define an ethical mandate for pediatric priority in deceased donor allocation to pediatric recipients, and determine an optimal path forward to execute this mandate on an international scale

Please respond to this survey link in order to provide information to help us define allocation practices for children worldwide! Thank you for your care of children and your involvement in the IPTA.

Click here for survey

Meet the Greats!

Spotlight on inspirational IPTA member

Richard Trompeter, UK

Dr. Richard Trompeter is Emeritus Consultant Paediatric Nephrologist at Great Ormond Street Hospital for Children (GOSH), London, and Honorary Consultant Nephrologist and Clinical Academic at University College London Centre for Nephrology, The Royal Free Hospital. He is a graduate of Guy’s Hospital School of Medicine, London.

He trained in paediatric nephrology at GOSH and the Institute of Child Health where as a research fellow he developed an interest in nephrotic syndrome, which remains a major clinical and academic part of his career. He completed his training at Guy’s where between 1979 -1983 and was privileged to be part of the team responsible for pioneering kidney transplantation in some of the youngest children in the UK at that time.

He was appointed as Consultant Paediatric Nephrologist at The Royal Free Hospital in 1984 and set up the renal transplant programme for children in the north of London and subsequently established the dialysis and kidney transplant programme for children at GOSH in 1986, and became a full time Consultant at GOSH in 1989. The transplant service developed a national and international reputation, and he was a major participant in initial randomised clinical trials to demonstrate efficacy of various immunosuppressive regimens.

He was appointed the first Chairman of the GOSH Clinical Ethics Committee in 2000.

He retired from GOSH in 2009 and set up the first Transition Service for young adults with CKD at the UCL Centre for Nephrology at The Royal Free Hospital campus. Current research is focused on the molecular genetics of nephrotic syndrome and the benefit of transition services.

He has been a supporter of IPTA from 2005, serving on many committees, Council and EC. President from 2013 – 2015 and founding Chairman of the Ethics Committee 2017 -2019.

He is a past President of the Paediatric and Child Health Section of the Royal Society of Medicine,  and previously a member of the  Ethics Committees of the British Transplant Society, European Renal Association and TTS.

Married to Babs, they have four children, Sara a Consultant Haematologist, Alex a Consultant Orthopaedic Surgeon, Nick a Barrister, Becky the marketing and production manager for the National Society for the Prevention of Cruelty to Children (NSPCC), and eight grandchildren.

Steven Webber, USA

Dr. Steven Webber is the Chair of the Department of Pediatrics at Vanderbilt University and the James C. Overall Professor of Pediatrics. He also serves as Pediatrician-in-Chief of the Monroe Carell Jr. Children’s Hospital. He is a native of the UK and graduated from the University of Bristol Medical School. He trained in internal medicine, pediatrics and pediatric cardiology in the UK, Canada and the US. He joined the faculty of the Children’s Hospital / University of Pittsburgh in 1994 where he served as Chief of the Division of Pediatric Cardiology, Co-Director of the Heart Institute, and Medical Director of the Heart and Heart-Lung Transplantation Program. 

His research interests include post-transplant lymphoproliferative disorders, understanding the genetic contributions to graft and patient outcomes and the role of antibodies in determining graft outcomes after pediatric thoracic transplantation. Dr. Webber has been the recipient of numerous federal and foundation grants. He has published widely and is the author of over 200 peer-reviewed publications. He has served as the Editor-in-Chief of the journal Pediatric Transplantation and is Co-Editor of three textbooks: Pediatric Solid Organ Transplantation, Post-Transplant Lymphoproliferative Disorders and Textbook of Organ Transplantation.

Dr. Webber has served as President of both the International Pediatric Transplant Association (IPTA) and the Pediatric Heart Transplant Study. He is a past Chair of the Thoracic Committee of the United Network for Organ Sharing. He has served on the Board of Directors of the American Society of Transplantation and of the International Society for Heart and Lung Transplantation. He recently received the 2019 IPTA Pioneer Award.

He enjoys reading history and learning Norwegian.  

Survey

IPTA Allied Health & Nursing Professionals

Dear Transplant Colleagues,

The IPTA Allied Health and Nursing Professionals (AHNP) committee have compiled a professional practice survey. 

The goals of this survey are:

  1. To describe the prevalence and diversity of the clinical, research and teaching practice of Allied Health (AH) and Nursing team members internationally.
  2. To understand the multidisciplinary composition of transplant care teams and develop an international framework regarding professional practice.
  3. To identify possible barriers and challenges for AH and Nursing professionals within their role, with the aim of improving and supporting AH and Nursing practice development specifically within the field of pediatric transplant.
  4. To support a publication related to international AH and Nursing practice in pediatric solid organ transplantation   

If you are an Allied Health or Nursing professional (both members and non-members of IPTA): please consider completing the survey (see link below) and forwarding it to your non-IPTA colleagues.

Physicians and other members: Please share this email with your Allied Health and Nursing colleagues at your centre, and encourage them to complete the survey (You do not have to be a member of IPTA to complete this survey)

You may open the survey in your web browser by clicking the button below.

IPTA Allied Health and Nursing Survey

The survey should only take about 5-10  minutes to complete. You participation is voluntary, and all responses will be de-identified to ensure anonymity. 

We are extremely grateful for your time 

IPTA AHNP Committee

IPTA 2021

11th Congress of International Pediatric Transplant Association

In Memoriam

Dr. John S. Najarian (1927-2020)

It is with deep sadness that the members of IPTA mourn our first President (2001-2003) John S. Najarian.

After completing his surgical training John joined the faculty at the University of California San Francisco and initiated one of the first kidney transplant programs in the United States which included transplanting children. In 1967 John moved to the University of Minnesota to head the Department of Surgery, a position he held until 1993.

John was physically a “big” man but one of his passions was transplanting infants and young small children with End Stage Kidney Disease.  The group at Minnesota led the way in demonstrating the ability to overcome the technical abilities in transplanting kidneys from either live-related or deceased donors into infants.

John organized the first international meeting on organ transplantation in children in in 1995 in Minneapolis. It was a huge success and led to a second meeting in Paris in 1997 at which time the ground work for the Journal Pediatric Transplantation was initiated. The inaugural meeting of IPTA took place in Venice, Italy in 1999 at which time the by-laws of IPTA were developed and Dr Najarian was identified for a leadership role in the nascent organization. The next meeting under John’s leadership was to take place in Rio de Janeiro Brazil in 2001; but the catastrophe of the Twin Towers in New York City dictated a delay of one year. John guided to organization during this very difficult time and ultimately was the first President of an IPTA Congress in Rio in 2002.

Dr Najarian was not only a superb transplant surgeon but also an excellent scientist.

IPTA membership is deeply saddened by Dr Najarian’s passing and we send our heartfelt condolences to the members of his family.

Richard N. Fine, MD
Distinguished Professor of Pediatrics
Renaissance School of Medicine at Stony Brook University
Stony Brook NY, USA
Past President and Secretary – Treasurer of IPTA

Literary Review

Education Committee

Literary review provided by Rupesh Raina, MD on behalf of the IPTA Education Committee.

Pediatric Transplantation and COVID-19

30.6 million COVID-19 cases, 950,000 deaths, an increase of two million cases in the third week of September accompanied the new record number of reported cases of COVID-19 in a single week.1 Despite increased awareness and dedication to understanding the effect of the virus, there are gaps in the knowledge that affect the management of children, especially those undergoing transplantation procedures. Coupled with the emergence of novel and existing strains that disproportionally affect children and immunocompromised, there remain concerns COVID-19 strains may further complicate treatment after transplant.2,3,4 Although respiratory viral infections can occur in up to 38% of patients following transplant and follow-up has reduced mortality to below 4%, known poor outcomes among the immunocompromised with COVID-19 necessitate definite consensus.5,6

Ongoing discussion on epidemiology has established that illness among pediatric patients is frequently asymptomatic and, if not, presents with mild to moderate severity.8,9,10 It is noted that the pediatric patients present with lower rates of fever, cough, shortness of breath, and require less hospitalization than counterpart cohorts in the age range between 16 and 64.11,12 This finding mirrors the predicated results from prior outbreaks with the SARS and MERS associated coronaviruses.13,14 There are still cases of critically ill pediatric patients with COVID-19; case reports spanning the international community highlight complications of pediatric patients with comorbidities alongside shock and multisystem inflammation post-infection.15,16,17,18

There remain major gaps in establishing the differing prognosis of disease in children compared to adults. Reviews of cases reflect little discrepancy in transmission and infection rate compared to the adult population although most noted clinical risk score calculators (including COVID-GRAM) place emphasis on age. 19,20,21 Potential explanations for disease progression in pediatric population ranges from specific concentrations of angiotensin-converting enzymes (brought to attention by effect of ACEIs), humoral immunity response via interferons, cathepsin activity, and altered T-cell response due to age.21,22,23 Adding to the murkiness of the impact of COVID-19 on pediatric transplant populations, there is no consensus on the effect of immunosuppression particularly due to the potential therapeutic effects in managing observed cytokine storm in rare cases.24,25,26,27 Furthermore, though there are efforts underway to develop consensus statements for transplants in adult cases, there is an essential need for systematic data from pediatric settings to address consequences.28,29,30

The rapid transmission of COVID-19 has exposed the limited knowledge on the coronaviruses, particularly in children. The inadequate information for pathogenic differences in response to SARS-CoV-2 in pediatric cases and the immunocompromised has mystified the vital clinical management of immunosuppressed pediatric transplant patients. There are optimistic signs in initiating multi-center data collection to address these issues and preliminary data suggests prognoses of children receiving transplants may parallel immunocompetent children; however, further targeted and collaborative investigations are key to not only improving outcomes of COVID-19 in pediatric transplant cases but also in demystifying the viral pathological process.31

References

  1. WHO COVID-19 – Situation Report, 05/05/2020. 2020. at https://www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports/
  2. Abdul-Rasool S, Fielding BC. Understanding Human Coronavirus HCoV-NL63. Open Virol J. 2010;4:76-84. Published 2010 May 25. doi:10.2174/1874357901004010076
  3. Kumar D, Michaels MG, Morris MI, Green M, Avery RK, Liu C, Danziger-Isakov L, Stosor V, Estabrook M, Gantt S, Marr KA, Martin S, Silveira FP, Razonable RR, Allen UD, Levi ME, Lyon GM, Bell LE, Huprikar S, Patel G, Gregg KS, Pursell K, Helmersen D, Julian KG, Shiley K, Bono B, Dharnidharka VR, Alavi G, Kalpoe JS, Shoham S, Reid GE, Humar A; American Society of Transplantation H1N1 Collaborative Study Group. Outcomes from pandemic influenza A H1N1 infection in recipients of solid-organ transplants: a multicentre cohort study. Lancet Infect Dis. 2010 Aug;10(8):521-6. doi: 10.1016/S1473-3099(10)70133-X. Epub 2010 Jul 9. PMID: 20620116; PMCID: PMC3045703.
  4. Choi SM, Boudreault AA, Xie H, Englund JA, Corey L, Boeckh M. Differences in clinical outcomes after 2009 influenza A/H1N1 and seasonal influenza among hematopoietic cell transplant recipients. Blood. 2011 May 12;117(19):5050-6. doi: 10.1182/blood-2010-11-319186. Epub 2011 Mar 3. PMID: 21372154; PMCID: PMC3109531.
  5. Tsoumakas K, Giamaiou K, Goussetis E, Graphakos S, Kossyvakis A, Horefti E, Mentis A, Elefsiniotis I, Pavlopoulou ID. Epidemiology of viral infections among children undergoing hematopoietic stem cell transplant: Α prospective single-center study. Transpl Infect Dis. 2019 Aug;21(4):e13095. doi: 10.1111/tid.13095. Epub 2019 May 2. PMID: 30993823.
  6. Danziger-Isakov L, Steinbach WJ, Paulsen G, et al. A Multicenter Consortium to Define the Epidemiology and Outcomes of Pediatric Solid Organ Transplant Recipients With Inpatient Respiratory Virus Infection. J Pediatric Infect Dis Soc. 2019;8(3):197-204. doi:10.1093/jpids/piy024
  7. Eastin C, Eastin T. Epidemiological characteristics of 2143 pediatric patients with 2019 coronavirus disease in China: Dong Y, Mo X, Hu Y, et al. Pediatrics. 2020; doi: 10.1542/peds.2020-0702. J Emerg Med. 2020;58(4):712-713. doi:10.1016/j.jemermed.2020.04.006
  8. Jutzeler CR, Bourguignon L, Weis CV, Tong B, Wong C, Rieck B, Pargger H, Tschudin-Sutter S, Egli A, Borgwardt K, Walter M. Comorbidities, clinical signs and symptoms, laboratory findings, imaging features, treatment strategies, and outcomes in adult and pediatric patients with COVID-19: A systematic review and meta-analysis. Travel Med Infect Dis. 2020 Aug 4;37:101825. doi: 10.1016/j.tmaid.2020.101825. Epub ahead of print. PMID: 32763496; PMCID: PMC7402237.
  9. Foust AM, McAdam AJ, Chu WC, Garcia-Peña P, Phillips GS, Plut D, Lee EY. Practical guide for pediatric pulmonologists on imaging management of pediatric patients with COVID-19. Pediatr Pulmonol. 2020 May 28:10.1002/ppul.24870. doi: 10.1002/ppul.24870. Epub ahead of print. PMID: 32462724; PMCID: PMC7283678.
  10. Dong Y, Mo X, Hu Y, Qi X, Jiang F, Jiang Z, et al. . Epidemiological characteristics of 2143. pediatric patients with 2019 coronavirus disease in China. Pediatrics. (2020). e20200702. 10.1542/peds.2020-0702
  11. CDC COVID-19 Response Team. Coronavirus Disease 2019 in Children - United States, February 12-April 2, 2020. MMWR Morb Mortal Wkly Rep. 2020 Apr 10;69(14):422-426. doi: 10.15585/mmwr.mm6914e4. PMID: 32271728; PMCID: PMC7147903.
  12. Dong, Yuanyuan, Xi Mo, Yabin Hu, Xin Qi, Fang Jiang, Zhongyi Jiang, and Shilu Tong. "Epidemiological characteristics of 2143 pediatric patients with 2019 coronavirus disease in China." Pediatrics (2020).
  13. Al-Tawfiq JA, Kattan RF, Memish ZA. Middle East respiratory syndrome coronavirus disease is rare in children: An update from Saudi Arabia. World J Clin Pediatr. 2016;5(4):391-396. Published 2016 Nov 8. doi:10.5409/wjcp.v5.i4.391
  14. Stockman LJ, Massoudi MS, Helfand R, et al. Severe acute respiratory syndrome in children. Pediatr Infect Dis J. 2007;26(1):68-74. doi:10.1097/01.inf.0000247136.28950.41
  15. Patel PA, Chandrakasan S, Mickells GE, Yildirim I, Kao CM, Bennett CM. Severe Pediatric COVID-19 Presenting With Respiratory Failure and Severe Thrombocytopenia. Pediatrics. 2020;146(1):e20201437. doi:10.1542/peds.2020-1437
  16. André N, Rouger-Gaudichon J, Brethon B, et al. COVID-19 in pediatric oncology from French pediatric oncology and hematology centers: High risk of severe forms?. Pediatr Blood Cancer. 2020;67(7):e28392. doi:10.1002/pbc.28392
  17. Nguyen DC, Haydar H, Pace ER, Zhang XS, Dobbs KR. Pediatric Case of Severe COVID-19 With Shock and Multisystem Inflammation. Cureus. 2020 Jun 29;12(6):e8915. doi: 10.7759/cureus.8915. PMID: 32742881; PMCID: PMC7389873.
  18. Sun, D., Li, H., Lu, X. et al. Clinical features of severe pediatric patients with coronavirus disease 2019 in Wuhan: a single center’s observational study. World J Pediatr 16, 251–259 (2020). https://doi.org/10.1007/s12519-020-00354-4
  19. Rajmil L. Role of children in the transmission of the COVID-19 pandemic: a rapid scoping review. BMJ Paediatr Open. 2020;4(1):e000722. Published 2020 Jun 21. doi:10.1136/bmjpo-2020-000722
  20. Liang W, Liang H, Ou L, et al. Development and Validation of a Clinical Risk Score to Predict the Occurrence of Critical Illness in Hospitalized Patients With COVID-19. JAMA Intern Med. 2020;180(8):1081-1089. doi:10.1001/jamainternmed.2020.2033
  21. Bellino S, Punzo O, Rota MC, Del Manso M, Urdiales AM, Andrianou X, Fabiani M, Boros S, Vescio F, Riccardo F, Bella A, Filia A, Rezza G, Villani A, Pezzotti P; COVID-19 Working Group. COVID-19 Disease Severity Risk Factors for Pediatric Patients in Italy. Pediatrics. 2020 Jul 14:e2020009399. doi: 10.1542/peds.2020-009399. Epub ahead of print. PMID: 32665373.
  22. European Centre for Disease Prevention and Control. 2020. COVID-19 In Children And The Role Of School Settings In COVID-19 Transmission. [online] Available at: <https://www.ecdc.europa.eu/en/publications-data/children-and-school-settings-covid-19-transmission> [Accessed 22 September 2020].
  23. South AM, Brady TM, Flynn JT. ACE2 (Angiotensin-Converting Enzyme 2), COVID-19, and ACE Inhibitor and Ang II (Angiotensin II) Receptor Blocker Use During the Pandemic: The Pediatric Perspective. Hypertension. 2020 Jul;76(1):16-22. doi: 10.1161/HYPERTENSIONAHA.120.15291. Epub 2020 May 5. PMID: 32367746; PMCID: PMC7289676.
  24. Zhang Y, Xu J, Jia R, Yi C, Gu W, Liu P, Dong X, Zhou H, Shang B, Cheng S, Sun X, Ye J, Li X, Zhang J, Ling Z, Ma L, Wu B, Zeng M, Zhou W, Sun B. Protective humoral immunity in SARS-CoV-2 infected pediatric patients. Cell Mol Immunol. 2020 Jul;17(7):768-770. doi: 10.1038/s41423-020-0438-3. Epub 2020 May 7. PMID: 32382126; PMCID: PMC7203722.
  25. Lai Q, Spoletini G, Bianco G, et al. SARS-CoV2 and immunosuppression: A double-edged sword [published online ahead of print, 2020 Jul 8]. Transpl Infect Dis. 2020;e13404. doi:10.1111/tid.13404
  26. Shivakumar S, Smibert OC, Trubiano JA, Frauman AG, Liew DF. Immunosuppression for COVID-19: repurposing medicines in a pandemic. Aust Prescr. 2020;43(4):106-107. doi:10.18773/austprescr.2020.037
  27. Mehta P, McAuley DF, Brown M, et al. COVID-19: consider cytokine storm syndromes and immunosuppression. Lancet. 2020;395(10229):1033-1034. doi:10.1016/S0140-6736(20)30628-0
  28. Doná D, Torres Canizales J, Benetti E, Cananzi M, De Corti F, Calore E, Hierro L, Ramos Boluda E, Melgosa Hijosa M, Garcia Guereta L, Pérez Martínez A, Barrios M, Costa Reis P, Teixeira A, Lopes MF, Kaliciński P, Branchereau S, Boyer O, Debray D, Sciveres M, Wennberg L, Fischler B, Barany P, Baker A, Baumann U, Schwerk N, Nicastro E, Candusso M, Toporski J, Sokal E, Stephenne X, Lindemans C, Miglinas M, Rascon J, Jara P; ERN TransplantChild. Pediatric transplantation in Europe during the COVID-19 pandemic: Early impact on activity and healthcare. Clin Transplant. 2020 Aug 12:e14063. doi: 10.1111/ctr.14063. Epub ahead of print. PMID: 32786120; PMCID: PMC7435500.
  29. Al-Judaibi B, Almaghrabi R, Alghamdi M, Al-Hamoudi WK, AlQahtani M, Abaalkhail F, Shagrani M, Sanai FM. Saudi association for the study of liver diseases and transplantation position statement on liver transplantation during the COVID-19 pandemic. Saudi J Gastroenterol. 2020 Sep-Oct;26(5):233-239. doi: 10.4103/sjg.SJG_131_20. PMID: 32341229.
  30. Merhi B, Gohh R. Kidney Transplantation and COVID-19. R I Med J (2013). 2020 Sep 4;103(8):34-37. PMID: 32900010.
  31. Goss MB, Galván NTN, Ruan W, Munoz FM, Brewer ED, O'Mahony CA, Melicoff-Portillo E, Dreyer WJ, Miloh TA, Cigarroa FG, Ranch D, Yoeli D, Adams MA, Koohmaraie S, Harter DM, Rana A, Cotton RT, Carter B, Patel S, Moreno NF, Leung DH, Goss JA. The Pediatric Solid Organ Transplant Experience with COVID-19: An Initial Multi-Center, Multi-Organ Case Series. Pediatr Transplant. 2020 Sep 18:e13868. doi: 10.1111/petr.13868. Epub ahead of print. PMID: 32949098.

TTS 2020 Virtual Congress

Update

This year the 28th International biennial Congress of The Transplantation Society was planned to take place in Seoul, Korea. However, unfortunately the Sars-Cov2 (COVID 19) pandemic forced us to change the format of the Congress to a Virtual event. The decision was not easy and the timing to change the format a real challenge, but the meeting was not cancelled, or postponed; it was held as planned, though virtually.

Today we are very pleased to inform you that from September 13 to 18th, we witnessed a transformative and successful meeting that was able to bring together experts from all the regions of the transplant world, to share under this new format their latest science and knowledge in the field of transplantation.

The congress showed a superb technological development and support, allowing 3,336 healthcare professionals from around the world to have immediate and simultaneous access to knowledge and interaction with colleagues and experts, by using 3 full programs per day to accommodate all the time zones.

A total of 1,105 abstracts were submitted. 31 State of the art conferences (including Pediatric Transplantation), 38 oral presentations, 21 E-Posters, 25 Workshops, 4 TID dedicated activities, 3 plenary sessions and 2 Covid and sponsored symposium as well the Awards session could be seen on line. All registrants will have access for one year to all recorded sessions using the virtual congress web app.

Click here for WebApp (virtual.tts.org)

A lot was learned by the Scientific Program Committee and by the TTS staff and leadership, who were able to adjust to the current reality, for the benefit of the whole transplant society.

At the end of the meeting and hoping to meet again in person, it was announced that the next meeting will be placed for the first time in Latin-América, (the region that counts the largest number of TTS members), and the selected city is Buenos Aires. Place a save-the-date for September 10-14th, 2022 and join us in the wonderful city of Buenos Aires.

Prof. Gabriel E. Gondolesi, MD
Former LA TTS Council
Current TTS Treasurer

Visit www.tts2020.org for full details

Pediatric Transplantation

Update

Submitted by Burkhard Tonshoff & Sharon Bartosh on behalf of Pediatric Journal of Transplantation.

Impact Factor

The 2019 Impact Factors (IF) for Pediatric Transplantation (PETR) was released some weeks ago: PETR saw another great year with the 2-year IF increasing to 1.425 (up from 1.326). This is a great success of the entire Editorial Team of PETR and our reviewers. Many thanks for your hard work and this excellent collaboration!

Editorial Board

The Editorial Board of PETR has recently been rejuvenated. We thank those colleagues who have retired for their previous hard work for the journal and welcome their successors: Associate Editor “Transplant Immunobiology”: Adriana Zeevi. Editorial Board “Kidney”: Bethany Foster, Montreal, Canada; Britta Höcker, Heidelberg, Germany; Joshua Kausman, Melbourne, Australia; Anette Melk, Hannover, Germany; Asha Moudgil, Washington, USA. “Liver”: Christine S. Hwang, Dallas, USA; Eirini Kyrana, Leeds, UK; Emily Perito, San Francisco, USA; James E Squires, Pittsburgh, USA; Gordon Thomas, Sydney, Australia; Nam-Joon Yi, Seoul, Korea. “Heart/Lung”: Justin Godown, Nashville, USA; Jeffrey Gossett, San Francisco, USA; Nicolaus Schwerk, Hannover, Germany; Brigitte Stiller, Freiburg (Bad Krozingen), Germany; Glen Philip Westall, Melbourne, Australia. “Intestine”: Yaron Avitzur, Toronto, Canada; Jonathan Hind, London, UK; Mureo Kasahara, Tokyo, Japan. “Stem Cell”: Behnam Sadeghi, Huddinge, Sweden; Jacek Toporski, Lund, Sweden. “Transplant Immunobiology”: Tom D. Blydt-Hansen, Vancouver, Canada; Eileen Chambers, Durham, USA; Michael Seifert, Birmingham, USA. “Infectious Diseases”: Sandra Asner, Lausanne, Switzerland; Daniel Dulek, Nashville, USA. “Quality of Life”: Anna Gold, Toronto, Canada; Nataliya Zelikovsky, Philadelphia, USA.

Special Sections/Issues

PETR is very much interested in publishing Special Sections or Issues with a series of review articles on a specific overarching topic. The April issue of PETR (volume 24, issue 3) published a series of articles as an “International Consensus Statement on Donor Management in Pediatric Heart Transplant” (Guest Editors Anne Dipchand and Richard Kirk). There is an upcoming special issue on the topic “Healthy Living in Pediatric Transplant Patients” (Guest Editors Asha Moudgil and Priya Verghese). If you have an idea on a Special Section/Issue of PETR on a cutting-edge topic and would like to act as the guest editor, please contact the Editors-in-Chief Sharon Bartosh and Burkhard Tönshoff. 

Review articles

There is a recent initiative of the PETR Editorial Team on soliciting Review Articles for the journal from experts in the field. The Editors-in-Chief, the Deputy Editors and Associate Editors have identified several cutting-edge research topics or important clinical themes which require an update. Please contact us if you or your group is interested in joining us in this initiative.

Social Media

Thanks to our Associate Editor for Social Media Vikas R. Dharnidharka, our journal is now on Twitter, with 416 followers at the time of this writing! This allows the journal and individual authors to publicize their work. Our associated International Pediatric Transplant Association (IPTA) is now also on Twitter. We have now integrated into our manuscript submission system two questions about an author’s Twitter handle (if available), and if the author would be interested in participating in a Twitter journal club if their article is accepted (voluntary). We hope to have our first Twitter journal club soon.


Past Issues

June 2020

Presidential Message

Dear all,

It seems amazing that it is already the middle of this unusual year which has been dominated by the COVID-19 pandemic and the anxiety associated at all levels. We have all seen changes in the way we live and work, with many transplant programs coming to a temporary halt while assessing the implications and risks of SARS-CoV-2.

On the whole, children appear to acquire and transmit this virus less, compared to adults despite having had transplants and being on immunosuppression. Their parents and medical teams experience anxiety as we find our way with new evidence. Please see a very informative SARS-CoV-2 Literary Review below by our ID Committee.

We are delighted that enthusiasm in our IPTA committees continues to grow, in that we have had over 65 applicants and would really like to thank the outgoing members for their service to IPTA – much appreciated!

We have had to change the way we communicate by relying on webinars and electronic methods as well as considering how we travel to and organize meetings. As a result, we have decided to postpone our IPTA 2021 congress in Prague from April 17-20 to later in the year September 11 – 14, 2021. We are still aiming for a face to face congress in the beautiful city of Prague during the 2021 European autumn.

News about September TTS 2020 is that it will be a completely Virtual meeting and we are excited that IPTA will still have a paediatric track – look out for the program.

Despite all this year’s upheaval, following interviews with our membership last year, the IPTA Council is excited about the development of our IPTA Strategic Plan 2020-2023. Look out for our upcoming international advocacy group survey as part of this process.

Please also find in this newsletter a literary review on recreational marijuana from the Education committee as well as comments from our Ethics committee.

We introduce a new initiative called “Meet the Great’s” – Deirdre Kelly, Richard Fine and Ron Shapiro on this occasion - pioneers in their field who have given years of service in making IPTA the great society it is today – read their stories!

Finally don't forget to pay your IPTA dues so as not to lose your membership privileges after June 2020.

Stay safe and thanks for all you do for the paediatric transplant community.

Best wishes

Mignon McCulloch
IPTA President

IPTA 2020

CALL FOR NOMINATIONS

IPTA is seeking qualified candidates to be considered for open Councilor and Officer positions beginning in April 2021.

IPTA Council 2019-2021

All applications will be reviewed by the IPTA Nominations Committee, who will present a final slate of candidate officers and councilors to the IPTA membership for the 2021 election.

The IPTA Nominations Committee welcomes nominations and applications from anyone who has been an IPTA member in good standing for at least 1 year. Service to IPTA on committees or special activities relevant to the society is an asset.

Look out for the opening of the Call for Nominations in September 2020.  The deadline for online submission of applications is November 30, 2020.

Literary Review

Education Committee

Not too long ago, marijuana was considered a drug of abuse drug and tended to be a contraindication for transplant, especially in children.  The reality is quite different now where recreational marijuana is legal in 11 states for adults over the age of 21, and is legal for medical use in 44 states (including the recreational states). A recent article by Phillip et al. attempted to address the issue of health care provider opinions on the use of marijuana in their manuscript titled “Marijuana in pediatric and adult congenital heart disease, heart transplant listing: A survey of provider practices and attitudes” which was published in Pediatric Transplantation in January of 2020. A survey was sent to pediatric and adult congenital cardiac disease transplant providers (physicians, surgeons, transplant coordinators, and pharmacists), to see if their institution had a policy on marijuana use, and to assess their personal opinions about marijuana use in patients being considered for heart transplantation. The majority of respondents (73%) reported their institution did not have a policy on marijuana use in heart transplant candidates. One of the most interesting finding in this manuscript was that 73% of providers would consider illegal marijuana use an absolute/relative contraindication to heart transplant listing, but the number were lower for legal use. Fifty-seven percent of providers consider a legal recreational user an absolute/relative contraindication. That number decreased to 21% for legal medical users.  As expected there was great variability in the responses to this survey.  It is clear that most providers from this survey feel that marijuana is both physically and mentally harmful to pediatric patients, but interestingly, they felt better if it was being used for medical purposes. They also felt better with oral or transdermal routes rather than inhaled.  This article brings a lot of issues surrounding marijuana, to the forefront.  Unfortunately, marijuana is still a scheduled I drug (meaning there is no accepted medical use and it has a high addictive potential), making the likelihood of randomized controlled trials less likely in the near future.  This manuscript provides a springboard in addressing this difficult topic and will hopefully lead to further meaningful discussions.

Ethics Committee

Update

Our committee’s primary activity and focus at this time has been the development of position statements on topics of ethical interest for IPTA.  It is our hope that these position statements will serve a dual purpose.  The first is that they will serve as an expression of the values that we share as individuals engaged in the care of pediatric transplant candidates and recipients worldwide.  The second is that they will provide a foundation upon which we can build to achieve the association’s broader goal to advocate on issues of concern to our patients within the context of individual nations as well as the broader international community.

With this goal in mind, we have begun the development of our position statement on the ethical justifications for pediatric priority in organ transplant, which we hope to share with the broader community in the months to come.

Many thanks,

Michael Freeman
Chair, Ethics Committee

Important Notice

about IPTA Membership

Dear IPTA Colleagues,

In these challenging times, we remain very grateful for and reliant upon members’ ongoing support. Several members have continued to pay 2020 dues; however a significant proportion of our membership remains unpaid. We strongly encourage all members to renew IPTA membership, as our dues remains a key source of support for IPTA programs. IPTA members enjoy a number of benefits, including:

  • COVID-19 toolkit summarizing published SOT data with resource links for both IPTA members and SOT families
    click here
  • Access to IPTA website, including Member’s Only section
  • Subscription to Pediatric Transplantation
  • Access to IPTA quarterly newsletter
    click here
  • Reduced registration fees for biennial Congress with upcoming Congress in Prague 2021
  • Access to education from IPTA meetings including pediatric symposia from ATC and post-graduate course presentations

If you have already paid your 2020 dues, thank you for your support of IPTA! If you have not yet paid, please click here to renew your membership now. Please note that failure to pay your dues by the end of June 2020 will result in your membership becoming delinquent, which will result in loss of membership benefits. Your ongoing support is greatly appreciated!

Sincerely,

Cozumel Pruette
Chair, Membership Committee

Meet the Greats!

Spotlight on inspirational IPTA member

Richard Fine

After completing a Chief Resident position @ Children’s Hospital of Los Angeles (CHLA)   in 1966, Dr. Richard Fine joined the faculty of the University of Southern California (USC) as an Instructor in Pediatrics @ CHLA in the Division of Metabolic- Renal Diseases. His interest @ that time was in the former not the latter discipline. In September of 1966, he was referred a 6 year old boy with CKD and ESKD  and a biopsy diagnosis of Chronic GN.  Without the availability of Hemodialysis @ CHLA he initiated Acute Peritoneal Dialysis and for the next 5 months undertook repetitive acute PD on this patient while he assiduously attempted to find alternative facilities to provide ESRD care. The latter were unsuccessful; however, a surgical team from a nearby hospital who had just initiated an adult  renal  transplantation program agreed to undertake the procedure on this patient with his father’s kidney @ CHLA and an adult nephrologist colleague offered to provide hemodialysis equipment and technical expertise in the event that dialysis was required post-transplant since the resumption of PD would not have been an alternative. After considerable discussion the medical and administrative leadership of CHLA agreed to proceed with the proviso that Dr. Fine learned how to undertake hemodialysis in children  and how to manage pediatric patients following kidney transplantation. This child received a transplant from his father in February 1967 and the kidney functioned until early 2020 (almost 53 years) when this now almost 60 year gentlemen required the initiation of hemodialysis. In June 1967, Dr. Fine embarked upon a career as a Pediatric Nephrologist by spending a month @ the Home  Hemodialysis  training center @ Mt Sinai Hospital in Los Angeles. In August 1967 the first child underwent hemodialysis @ CHLA and in December 1967 the first patient received a kidney transplant performed by the faculty @ CHLA. Subsequently he developed the first multidisciplinary team to treat children with ESRD and during the latter part of the 1960’s and during the 1970’s pediatric nephrology colleagues from around the world visited CHLA to obtain expertise in the management of children with ESRD and returned to their institutions to initiate Dialysis and Transplantation programs.

In 1980 Dr. Fine accepted the position of Head, Division of Pediatric Nephrology @ UCLA School of Medicine and during the 1980’s, with the help of a number of colleagues and fellows from around the world, developed an outstanding ESRD program that incorporated basic and clinical research with clinical care that was instrumental in moving ESRD care for children forward.

Over the subsequent 30 years Dr. Fine had leadership roles (Councillor, Secretary, Treasurer, President) in the following  academic societies: Americana Society of Pediatric Nephrology, The Transplantation Society, International Pediatric Nephrology Association, International Peritoneal Dialysis Association, NAPRTCS, American Society of Transplantation and most recently the President of the International Pediatric Transplant Association from 2009 - 2011. His involvement in these organizations facilitated his ability to enhance the care of children worldwide with ESKD.

Shawney and Richard will have been married for 48 years this August. Between them they have 4 children, 11 grandchildren and 2 great grandsons. Their favorite hobby is traveling which is currently on hold. Dr. Fine is still teaching and supervising residents and medical students @ Stony Brook (Renaissance School of Medicine) and in Los Angeles @ LAC+USC (Keck School of Medicine). Their eldest granddaughter is a 3rd Medical Student @ Stony Brook and she aspires to be an Infertility Physician.

Deirdre Kelly

Professor Deirdre Kelly is Professor of Paediatric Hepatology at the University of Birmingham, Consultant Paediatric Hepatologist and Founding Director of the Liver Unit for Birmingham Women’s & Children's Hospital NHS Foundation Trust. She was born and brought up in India and is a graduate of Trinity College, Dublin.

She has trained in both adult and paediatric gastroenterology and hepatology. She set up the Paediatric Liver Unit at Birmingham Women’s & Children's Hospital in 1989 which provides a national and international service for children with liver failure and undergoing liver transplantation, focused on family centres care which has transformed survival and outcome for these children.

Professor Kelly’s research interests include understanding the genetic basis for neonatal liver disease, improving diagnosis using innovative genetic screening and developing models to treat genetic disease. Her research has led to centralisation of care for children with biliary atresia; improvements in therapy for viral hepatitis in children and the quality and outcome of life following liver and/or intestinal transplantation. She has initiated international research into graft outcomes post-transplant (Graft Injury Group).

She has been President of the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) (2006-2010), British Society for Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) (2004-2007) and the International Pediatric Transplant Association (IPTA) (2002-2005).
Professor Kelly is author of several textbooks about paediatric liver disease and has published many original articles and chapters on liver disease, liver transplantation and viral hepatitis. She is deputy Editor of Liver Transplantation (2015- ).

Professor Kelly was made a CBE (Commander of the British Empire) by her Majesty the Queen in 2016 and received the ESPGHAN Distinguished Service award in 2016 and the EASL Recognition Award in 2019.

She is most proud of being mother to two wonderful sons and grandmother to four grandchildren.

Ron Shapiro

Ron Shapiro, MD is Professor of Surgery and Surgical Director, Kidney/Pancreas Transplantation, at the Recanati/Miller Transplantation Institute at the Icahn School of Medicine at Mount Sinai.  He has been involved in clinical adult and pediatric kidney transplantation and in adult pancreas transplantation for over 30 years.  The focus of Dr. Shapiro’s research has been generally within the fields of clinical renal and pancreatic transplantation, and more specifically, with the development and optimization of immunosuppressive protocols.  He has participated in a number of randomized clinical trials to demonstrate the efficacy of tacrolimus-based immunosuppression, and has helped develop the agent for use in clinical renal and pancreatic transplantation.  More recently, he has focused on strategies to minimize immunosuppression after transplantation.  Additional interests include analysis of adverse events related to immunosuppression, including post-transplant diabetes mellitus and viral infections, including cytomegalovirus, Epstein-Barr virus, and BK virus.  Finally, a significant part of Dr. Shapiro’s academic interest has involved the publication of comprehensive textbooks, including an Atlas of Organ Transplantation, a textbook on Renal Transplantation, a textbook on Pancreatic Transplantation, and a textbook on Living Donation. He has co-authored over 480 papers and book chapters, edited 4 books and given over 550 lectures around the world.  He is the current Editor in Chief of Clinical Transplantation.  

Dr. Shapiro is a longstanding supporter of IPTA.  He joined IPTA in 1999, was on the IPTA Council from 2005 – 2009 and contributed to multiple different IPTA committees and initiatives over the years.  Dr. Shapiro became President Elect in 2011, President in 2013, and finally served as Past President from 2015 – 2017.  He helped to transition IPTA to becoming a section of TTS where he has served as Councilor (2004-2006), Treasurer (2006-2010), Vice-President (2010-2013) and President 2013 – 2015. 

Dr. Shapiro has been married to Mary Austin since 1985 and they have 2 daughters, Rachel (who is a tax attorney) and Ana (who teaches high school science and engineering).  His interests outside of medicine include photography, folk guitar and traveling.

IPTA 2021

11th Congress of International Pediatric Transplant Association

Literary Review

ID Committee

Prepared by Arnaud L’Huillier, Michael Green, and Monica Ardura on behalf of the IPTA IDCARE committee

Children, Transplantation, and SARS-CoV-2

COVID-19 caused by the novel coronavirus Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) has emerged since December 2019 to quickly cause a global pandemic.  Now 5 months into the pandemic and with over 3.5 million cases leading to 243,401 deaths, we are still learning about the impact of COVID-19 on children, including those after transplantation.1 Extrapolating from experience with other community respiratory viral infections, there was initial concern that SARS-CoV-2 would disproportionally affect children, cause more severe disease and worse outcomes, particularly in pediatric transplant recipients given their underlying immunosuppression and other comorbidities.  Influenza infection for example, is associated with increased morbidity and mortality among transplant recipients.2-4 Similarly, transplant recipients are more at risk for severe respiratory syncytial virus (RSV), parainfluenza virus (PIV), adenovirus (ADV) and possibly human metapneumovirus (HMPV) infections.3-5

However, early preliminary data from Asia, followed by Europe, and now North America report that children account for only ~ 2% [range 0.9-4.8%] of documented COVID-19 cases.6-11   Furthermore, the clinical manifestations in children in general are not as severe as their adult counterparts.7,12  More frequently, children may be asymptomatic or have mild to moderate disease and are even less likely to experience the typical symptoms such as fever, cough, or shortness of breath described in adults.7,9,12  Interestingly, children were also underrepresented in terms of both frequency and severity of infections with SARS-CoV-1 and MERS-CoV.13,14 Whether this represents a common viral characteristic across coronaviruses is unknown.   Infection with human coronaviruses (HCoV), such as HCoV-229E, -NL63, -OC43 and -HKU1 is also less frequent in children than adults, causing fewer lower respiratory tract infections (LRTIs).15  Severe COVID-19 presentations in children are overall rare (occurring in 6% of children vs ~25% of adults), occur more frequently in younger children, and carry lower case fatality rates than adults.6,7,9,16-21 However, emerging data in the US from the epicenter in New York City, describe a higher rate for pediatric intensive care admissions and severe disease in older children than previously recognized.22  More recently, reports from Europe of a Pediatric Multisystem Inflammatory Syndrome (PMIS) or multisystem inflammatory syndrome in children (MIS-C) in the United States are emerging and describe children presenting with fever and a hyperinflammatory shock phenotype resembling hemophagocytic lymphohistiocytosis, toxic shock syndrome, or Kawasaki disease with many having virologic or serologic evidence of COVID-19.23-28

The reasons behind the distinct epidemiology in children with COVID-19 remain to be elucidated.  Children may be as likely to be infected as adults, but infrequently have disease progression.29,30  Some proposed explanations include that children are overall less susceptible to SARS-CoV-2 possibly related to distinct pediatric angiotensin-converting enzyme receptor concentrations or activity in the LRT, lack of being ‘primed’ with HCoV antibody or alternatively cross-reactive immunity, an immature or less robust immune response, distinct T cell repertoire, or lack of immunosenescence.26,31,32  Aside from needing a better understanding of the host response to infection, much of our current knowledge of SARS-CoV-2 viral dynamics is based on data from immunocompetent adults.33-36 Additional data of viral dynamics in children with distinct clinical manifestations are needed.37,38  The number of remaining questions re: COVID-19 in children currently add to the challenges of pediatric transplantation.39

Risk factors for severe disease and mortality with COVID-19 are advanced age, cardiac diseases, diabetes, hypertension and obesity.35,40,41 Surprisingly, immunosuppression and transplantation have not been consistently been described as risk factors for SARS-CoV-2 infection42-45 though data are emerging46 and they have previously been identified as risk factors for severe infection with other HCoV.4,47  Similarly, few cases of SARS-CoV-1 and MERS-CoV were reported among adult transplant recipients, including atypical presentations48-51, but no pediatric cases.  For SARS-CoV-2, published infections have been documented in the adult transplant setting, with notable geographic differences in both prevalence and severity.52-54  Few published cases have been reported in pediatric SOT recipients thus far.55-57

Despite learning a large amount of information about COVID-19 in a short time, there continue to be significant knowledge gaps of this disease in children.  The lack of COVID-19- associated morbidity or mortality reported in the pediatric and immunocompromised transplant population remains puzzling. It has been suggested that the host innate immune response is the main driver of lung tissue damage during coronavirus infection, perhaps explaining why immunocompromised patients may be underrepresented in the current pandemic.55 Whether there are underlying biologic differences in children vs adults to explain these differences remains to be clarified. Improved understanding of these differences will likely lead to better understanding of viral pathogenesis and host responses.  Additionally, concerted, multi-institutional efforts are needed to better ascertain the epidemiology, clinical characteristics, and outcomes of COVID-19 in pediatric transplant recipients.  Given the rapidly evolving landscape, pediatric transplant centers would benefit from sharing their collective experiences and keeping abreast of the emerging data, best practices, and recommendations related to COVID-19.

References

  1. WHO COVID-19 - Situation Report, 05/05/2020. 2020. at https://www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports/.)
  2. Kumar D, Ferreira VH, Blumberg E, et al. A 5-Year Prospective Multicenter Evaluation of Influenza Infection in Transplant Recipients. Clin Infect Dis 2018;67:1322-9.
  3. Manuel O, Estabrook M, American Society of Transplantation Infectious Diseases Community of P. RNA respiratory viral infections in solid organ transplant recipients: Guidelines from the American Society of Transplantation Infectious Diseases Community of Practice. Clin Transplant 2019;33:e13511.
  4. Ison MG, Hirsch HH. Community-Acquired Respiratory Viruses in Transplant Patients: Diversity, Impact, Unmet Clinical Needs. Clin Microbiol Rev 2019;32.
  5. Florescu DF, Schaenman JM, Practice ASTIDCo. Adenovirus in solid organ transplant recipients: Guidelines from the American Society of Transplantation Infectious Diseases Community of Practice. Clin Transplant 2019;33:e13527.
  6. Wu Z, McGoogan JM. Characteristics of and Important Lessons From the Coronavirus Disease 2019 (COVID-19) Outbreak in China: Summary of a Report of 72314 Cases From the Chinese Center for Disease Control and Prevention. JAMA 2020.
  7. Dong Y, Mo X, Hu Y, et al. Epidemiological Characteristics of 2143 Pediatric Patients With 2019 Coronavirus Disease in China. Pediatrics 2020.
  8. Liu W, Zhang Q, Chen J, et al. Detection of Covid-19 in Children in Early January 2020 in Wuhan, China. N Engl J Med 2020;382:1370-1.
  9. Lu X, Zhang L, Du H, et al. SARS-CoV-2 Infection in Children. N Engl J Med 2020.
  10. Tagarro A, Epalza C, Santos M, et al. Screening and Severity of Coronavirus Disease 2019 (COVID-19) in Children in Madrid, Spain. JAMA Pediatr 2020.
  11. Korean Society of Infectious D, Korean Society of Pediatric Infectious D, Korean Society of E, et al. Report on the Epidemiological Features of Coronavirus Disease 2019 (COVID-19) Outbreak in the Republic of Korea from January 19 to March 2, 2020. J Korean Med Sci 2020;35:e112.
  12. Team CC-R. Coronavirus Disease 2019 in Children - United States, February 12-April 2, 2020. MMWR Morb Mortal Wkly Rep 2020;69:422-6.
  13. Stockman LJ, Massoudi MS, Helfand R, et al. Severe acute respiratory syndrome in children. Pediatr Infect Dis J 2007;26:68-74.
  14. Al-Tawfiq JA, Kattan RF, Memish ZA. Middle East respiratory syndrome coronavirus disease is rare in children: An update from Saudi Arabia. World J Clin Pediatr 2016;5:391-6.
  15. Ambrosioni J, Bridevaux PO, Wagner G, Mamin A, Kaiser L. Epidemiology of viral respiratory infections in a tertiary care centre in the era of molecular diagnosis, Geneva, Switzerland, 2011-2012. Clin Microbiol Infect 2014;20:O578-84.
  16. Pathak EB, Salemi JL, Sobers N, Menard J, Hambleton IR. COVID-19 in Children in the United States: Intensive Care Admissions, Estimated Total Infected, and Projected Numbers of Severe Pediatric Cases in 2020. J Public Health Manag Pract 2020.
  17. Ong JSM, Tosoni A, Kim Y, Kissoon N, Murthy S. Coronavirus Disease 2019 in Critically Ill Children: A Narrative Review of the Literature. Pediatr Crit Care Med 2020.
  18. Sanita ISD. Epidemia COVID-192020 March 9, 2020.
  19. Liu W, Zhang Q, Chen J, et al. Detection of Covid-19 in Children in Early January 2020 in Wuhan, China. N Engl J Med 2020.
  20. Castagnoli R, Votto M, Licari A, et al. Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) Infection in Children and Adolescents: A Systematic Review. JAMA Pediatr 2020.
  21. Cui Y, Tian M, Huang D, et al. A 55-Day-Old Female Infant infected with COVID 19: presenting with pneumonia, liver injury, and heart damage. J Infect Dis 2020.
  22. Chao JY DK, Herold BC, et al. Clinical Characteristics and Outcomes of Hospitalized and Critically Ill Children and Adolescents with Coronavirus Disease 2019 (COVID-19) at a Tertiary Care Medical Center in New York City. Journal of Pediatrics 2020.
  23. Riphagen S GX, Gonzalez-Martinez C, et al. Hyperinflammatory shock in children during COVID-19 pandemic The Lancet 2020.
  24. Mehta P, McAuley DF, Brown M, et al. COVID-19: consider cytokine storm syndromes and immunosuppression. Lancet 2020;395:1033-4.
  25. Jones VG, Mills M, Suarez D, et al. COVID-19 and Kawasaki Disease: Novel Virus and Novel Case. Hosp Pediatr 2020.
  26. Sun D, Li H, Lu XX, et al. Clinical features of severe pediatric patients with coronavirus disease 2019 in Wuhan: a single center's observational study. World J Pediatr 2020.
  27. Wang Y, Zhu F, Wang C, et al. The Risk of Children Hospitalized With Severe COVID-19 in Wuhan. Pediatr Infect Dis J 2020.
  28. Verdoni L MA, Gervasoni A, et al. An outbreak of severe Kawasaki-like disease at the Italian epicentre of the SARS-CoV-2 epidemic: an observational cohort study. The Lancet 2020.
  29. Bi Q, Wu Y, Mei S, et al. Epidemiology and transmission of COVID-19 in 391 cases and 1286 of their close contacts in Shenzhen, China: a retrospective cohort study. Lancet Infect Dis 2020.
  30. Lu X, Zhang L, Du H, et al. SARS-CoV-2 Infection in Children. N Engl J Med 2020;382:1663-5.
  31. Mizumoto K OR, and Nishiura H. Age specificity of cases and attack rate of novel coronavirus disease (COVID-19). 2020.
  32. Zhu L, Lu X, Chen L. Possible causes for decreased susceptibility of children to coronavirus. Pediatr Res 2020.
  33. Wolfel R, Corman VM, Guggemos W, et al. Virological assessment of hospitalized patients with COVID-2019. Nature 2020.
  34. Zou L, Ruan F, Huang M, et al. SARS-CoV-2 Viral Load in Upper Respiratory Specimens of Infected Patients. N Engl J Med 2020;382:1177-9.
  35. Pan Y, Zhang D, Yang P, Poon LLM, Wang Q. Viral load of SARS-CoV-2 in clinical samples. Lancet Infect Dis 2020;20:411-2.
  36. Wang W, Xu Y, Gao R, et al. Detection of SARS-CoV-2 in Different Types of Clinical Specimens. JAMA 2020.
  37. Cai J, Xu J, Lin D, et al. A Case Series of children with 2019 novel coronavirus infection: clinical and epidemiological features. Clin Infect Dis 2020.
  38. Jones TC MB, Veith T, et al. An analysis of SARS-CoV-2 viral load by patient age. 2020.
  39. Chen CY, Chen SF, Hollander SA, et al. Donor heart selection during the COVID-19 pandemic: A case study. J Heart Lung Transplant 2020;39:497-8.
  40. Ruan Q, Yang K, Wang W, Jiang L, Song J. Clinical predictors of mortality due to COVID-19 based on an analysis of data of 150 patients from Wuhan, China. Intensive Care Med 2020.
  41. Guan WJ, Ni ZY, Hu Y, et al. Clinical Characteristics of Coronavirus Disease 2019 in China. N Engl J Med 2020;382:1708-20.
  42. Leung GM, Hedley AJ, Ho LM, et al. The epidemiology of severe acute respiratory syndrome in the 2003 Hong Kong epidemic: an analysis of all 1755 patients. Ann Intern Med 2004;141:662-73.
  43. Badawi A, Ryoo SG. Prevalence of comorbidities in the Middle East respiratory syndrome coronavirus (MERS-CoV): a systematic review and meta-analysis. Int J Infect Dis 2016;49:129-33.
  44. Novel Coronavirus Pneumonia Emergency Response Epidemiology T. [The epidemiological characteristics of an outbreak of 2019 novel coronavirus diseases (COVID-19) in China]. Zhonghua Liu Xing Bing Xue Za Zhi 2020;41:145-51.
  45. Minotti C, Tirelli F, Barbieri E, Giaquinto C, Dona D. How is immunosuppressive status affecting children and adults in SARS-CoV-2 infection? A systematic review. J Infect 2020.
  46. Akalin E, Azzi Y, Bartash R, et al. Covid-19 and Kidney Transplantation. N Engl J Med 2020.
  47. Garbino J, Crespo S, Aubert JD, et al. A prospective hospital-based study of the clinical impact of non-severe acute respiratory syndrome (Non-SARS)-related human coronavirus infection. Clin Infect Dis 2006;43:1009-15.
  48. Kumar D, Humar A. Emerging viral infections in transplant recipients. Curr Opin Infect Dis 2005;18:337-41.
  49. Lam MF, Ooi GC, Lam B, et al. An indolent case of severe acute respiratory syndrome. Am J Respir Crit Care Med 2004;169:125-8.
  50. Kim SH, Ko JH, Park GE, et al. Atypical presentations of MERS-CoV infection in immunocompromised hosts. J Infect Chemother 2017;23:769-73.
  51. AlGhamdi M, Mushtaq F, Awn N, Shalhoub S. MERS CoV infection in two renal transplant recipients: case report. Am J Transplant 2015;15:1101-4.
  52. Zhu L, Xu X, Ma K, et al. Successful recovery of COVID-19 pneumonia in a renal transplant recipient with long-term immunosuppression. Am J Transplant 2020.
  53. Guillen E, Pineiro GJ, Revuelta I, et al. Case report of COVID-19 in a kidney transplant recipient: Does immunosuppression alter the clinical presentation? Am J Transplant 2020.
  54. Pereira MR, Mohan S, Cohen DJ, et al. COVID-19 in Solid Organ Transplant Recipients: Initial Report from the US Epicenter. Am J Transplant 2020.
  55. D'Antiga L. Coronaviruses and immunosuppressed patients. The facts during the third epidemic. Liver Transpl 2020.
  56. Russell MR HN, Alejos JC, et al. COVID-19 in a pediatric heart transplant recipient: Emergence of Donor Specific Antibodies. The Journal of Heart and Lung Transplantation 2020.
  57. Lagana SM, De Michele S, Lee MJ, et al. COVID-19 Associated Hepatitis Complicating Recent Living Donor Liver Transplantation. Arch Pathol Lab Med 2020.

Survey

INCREASED RISK DONOR LIVER GRAFTS FOR TRANSPLANT INTO PEDIATRIC RECIPIENTS

Dear Potential Participant:

As a practicing pediatric gastroenterologist/hepatologist or transplant surgeon you are invited to participate in an anonymous survey. The objective of our study is to evaluate “increased risk” donor livers (increased risk for recent HIV, HBV, and HCV infections) as an option for transplant into pediatric candidates. The goal of the study is to better understanding why or why not “increased risk” donor livers are accepted/rejected in these patients. We would like to collect your perspective and experience with increased risk liver donations and pediatric candidates. We ask that you consider completing this anonymous online survey, which will take approximately 10 minutes of your time. Please make use of the spaces for comments to provide reflections on your experience and opinions on this matter. Your participation in this survey is completely voluntary. Please only complete the survey once, even if you receive a second request. This project has been reviewed and approved by the Institutional Review Board at the University of Nebraska Medical Center (IRB # 016-20-EX).

Thank-you in advance for your time! If you have any questions or concerns you are welcome to contact us (information below).

Sincerely,

Dr. Blaire Anderson
Abdominal Transplant Surgery Fellow
University of Nebraska Medical Center
blaire.anderson@unmc.edu
402-599-0265

Dr. Nathalie Sela
Abdominal Transplant Surgery Fellow
University of Nebraska Medical Center
nathalie.sela@unmc.edu
402-650-4982

Dr. Arika Hoffman
Assistant Professor
University of Nebraska Medical Center
arika.hoffman@unmc.edu
402-559-3434

Click here for survey

IPTA Track at TTS 2020

Update

Due to the COVID-19 pandemic, TTS 2020 will now be a completely Virtual Meeting, across 3 different time zones!

IPTA will be representing the Pediatric track, with a SOTA, Early Morning Workshop, and a Pre-Congress Workshop incorporating 3 different sessions. Please check the program to find out more about how IPTA is leading the field in pediatric transplantation and continuing to advocate for children who require transplants.

Click here to visit WWW.TTS2020.ORG


March 2020

Presidential Message

Dear all,

I am hoping that after the Festive Season, 2020 has been a productive start for you and your teams. The IPTA Council started the year with a strategic planning session identifying our priorities for the next 3 years, which we will share with you shortly, in our ongoing mission to improve the care of pediatric transplantation worldwide.

Together with TTS, we are very pleased to announce that we have started combined IPTA-TTS Educational Webinars with the first webinar in November 2019 covering the topic of ‘Epitope Matching’ which was very successful. This was followed up in February by a webinar on ‘Donor Cell Free DNA Testing’. The next webinar on April 1st (12pm ET) will be our first Allied Health webinar titled: ‘Transplanting Social Media into Children’. These webinars have potential to have widespread reach to our members across the world.

We are currently updating our website as well as developing our social media profile.

We have a site visit planned for March for our current Outreach Program between a centre in Bangalore, India and Dallas, Texas.

Novel Coronavirus (Covid19) has hit headlines world-wide with particular concern for our immunosuppressed transplant patients. The TTS Section TID group have provided guidelines: https://tts.org/coronavirus.

Please also see this link from the CDC: https://www.cdc.gov/coronavirus/2019-ncov/index.html

Finally, we encourage you and your teams to save the date for the IPTA 2021 Congress in Prague 17 – 20 April 2021.

Thanks for all you do for the children in your care. We will shortly be putting out a call for new volunteers to join our committees as some members will be rotating off and we are very grateful for the work that they have done.

This does however provide opportunities for new volunteers, so please consider making a difference and joining our team.

Best wishes

Mignon McCulloch
IPTA President

Education Committee Update

This update is presented by Dr. Katherine Twombley, Chief, Pediatric Nephrology Interim Chief, Medical University of South Carolina and chair of the IPTA Education Committee.

Dear IPTA Colleagues,

This is an exciting time for the Education Committee. We have several new initiatives that we feel help us achieve the mission of the committee - to provide leadership in transplant education at all levels of training and expertise. We are proud to announce the first Joint TTS-IPTA Webinar Series on Pediatric Transplantation, and we recently completed the first TTS/IPTA educational webinar on epitope matching given by Medhat Askar (TTS) and Katherine Twombley (IPTA). We know that there are members of IPTA all over the globe and not everyone can attend the webinar live, so we have it available on the IPTA website under educational resources (https://www.tts.org/ipta-education/ipta-webinars). A webinar on Donor Cell Free DNA Testing followed in February, with the discussion led by Dr Stanley Jordan and Dr Daniel Brennan, moderated by Medhat Askar (TTS). The link is available here. Please note that you need to be logged in to the TTS website in order to access this link.

Our next webinar will be given on behalf of the Allied Health Committee in on 1st April (time tbc), with the tentative title ‘Transplanting Social Media into Children’. We hope you can join us. Feel free to email the education committee chair with ideas for future webinar ideas (twombley@musc.edu).

In keeping with our goal of developing educational resources for IPTA membership, our next initiative that we would like to announce is the IPTA Question Bank. This resource is available online (https://www.tts.org/ipta-education/ipta-resources?id=144 ) to all members. It is a great tool to not only stay up to date on current transplant topics, but you can also use it as a teaching tool for students, residents and fellows. Each question has a detailed answer and is accompanied by references if you would like further reading. We add new questions to the bank every quarter so come back and view often.

Another goal of the education committee is to support of educational activities at scientific meetings. IPTA 2019 was amazing and the SAC is well underway planning IPTA 2021. But did you know that there are other meetings where you can go to IPTA sessions?  We are actively planning the pediatric sessions sponsored by IPTA at TTS in Seoul, Korea. This meeting will be in September and IPTA has a pre-congress symposium as well as state of the art talks planned. We hope you will join us in Seoul, Korea on September 12th-16th.

We hope that you take advantage of all of the resources that IPTA has to offer and the education committee will continue to work hard for membership to provide the most up to date, educational materials.

Pediatric Transplantation Journal Update

Most read Pediatric Transplantation articles
From the Editors-in-Chief Sharon Bartosh and Burkhard Tönshoff of Pediatric Transplantation

This is a list of the 10 most down-loaded papers for PETR in 2019. However, it should be noted that the meaning of this data is relative; a paper published in December 2019 has one month to be downloaded, while a paper from Jan 2019 issue has 12 months.

Article DOI

Article Title

FTDs

First Published

10.1111/petr.13385

European Society of Pediatric Nephrology survey on current practice regarding recurrent focal segmental glomerulosclerosis after pediatric kidney transplantation. Antonia Bouts et al.

1058

March

10.1111/petr.13328

Pharmacokinetics of tacrolimus granules in pediatric de novo liver, kidney, and heart transplantation: The OPTION study.Nicholas J.A. Webb et al.

1048

Jan

10.1111/petr.13571

Live vaccines after pediatric solid organ transplant: Proceedings of a consensus meeting, 2018. Sneha Suresh, et al.

741

Sept

10.1111/petr.13338

Evaluation of the current post‐transplantation Human Leukocyte Antigen antibody screening in pediatric renal transplant recipients. Aysenur Demirok, et al.

660

Jan

10.1111/petr.13387

Pressure gradients, laboratory changes, and outcomes with transjugular intrahepatic portosystemic shunts in pediatric portal hypertension. Voytek Slowik, et al.

580

Apr

10.1111/petr.13391

Comparative pharmacokinetics of tacrolimus in stable pediatric allograft recipients converted from immediate‐release tacrolimus to prolonged‐release tacrolimus formulation. Jasej Rubik, et al.

562

Apr

10.1111/petr.13362

First report of successful transplantation of a pediatric donor liver graft after hypothermic machine perfusion. Maureen J.M.Werner, et al.

470

Feb

10.1111/petr.13357

Various initial presentations of Epstein‐Barr virus infection‐associated post‐transplant lymphoproliferative disorder in pediatric liver transplantation recipients: Case series and literature review. Lila Simakachorn, et al.

462

Jan

10.1111/petr.13326

Single kidney transplantation from donors with acute kidney injury: A single‐center experience. Yamei Jiang, et al.

433

Feb

10.1111/petr.13465

Physical activity and aerobic fitness in children after liver transplantation. G.J.Fjoyce Bos, et al.

418

Jun

Spotlight

the new IPTA Communications Committee

Introduction

Dr. Vikas R. Dharnidharka, MD, MPH, Professor and Chief Division of Pediatric Nephrology Washington University School of Medicine & St. Louis Children’s Hospital, brings us an Introduction of the new Communications Committee for the IPTA membership he chairs.

The New IPTA Communications Committee

In 2019, IPTA President Mignon McCulloch initiated a new Communications Committee for IPTA. The purpose of this Committee is to enhance the electronic and social media communications from IPTA and improve the society’s visibility, using the channels that have transformed how individuals communicate with each other. Dr. McCulloch appointed Dr. Vikas Dharnidharka as the first chair of this new Committee. Note that the IPTA Newsletter is still handled by the IPTA Publications Committee.

The Communications Committee held its first meeting at the IPTA meeting in Vancouver in May 2019. Present were IPTA President Dr. McCulloch, President-Elect Dr. Esquivel, Dr. Dharnidharka, and initial committee member Srinath Chinnakotla and Sondra Livingston and Katie Tait (TTS administration). At this meeting, the Committee’s charge and initial steps were reviewed and adopted.

The Committee has since added more members and completed several important steps. The IPTA Twitter account was set up and went live in October 2019 - the handle is @IPTAPedsTx.

The IPTA Twitter account already has 119 followers! This Twitter page will be used for promoting important IPTA announcements and policies and publicizing key issues of importance to IPTA. We encourage all IPTA members who are on Twitter to follow our IPTA Twitter handle. Note that the IPTA journal Pediatric Transplantation has its own handle @pedtransjrnl. The two accounts follow each other but the journal account is handled by the publisher Wiley.

The Communications Committee also helped review the IPTA website redesign and suggested some alterations.

A Facebook page has been created and will go live shortly. The Communications Committee will address other social media channels at a later time, if and when appropriate.

Current IPTA Communications Committee members include Dr Carlos Esquivel, Dr Srinath Chinnakotla, Dr Shawn West and Dr Allison Carroll. We are actively looking to recruit more Committee members. If you are interested in joining the Communications Committee, please contact Katie Tait at the TTS office katie.tait@tts.org.

To allow the office bearers, IPTA administrators and key Communications Committee members to post on IPTA social media accounts on behalf of the society, our Committee’s latest charge is to develop a Social Media Policy. A draft document has been created and is currently under review. We look forward to an exciting year ahead!

With many thanks

Vikas Dharnidharka
Chair, IPTA Communications Committee

IPTA is now on Twitter! @IPTAPedsTx

Survey

INCREASED RISK DONOR LIVER GRAFTS FOR TRANSPLANT INTO PEDIATRIC RECIPIENTS

Dear Potential Participant:

As a practicing pediatric gastroenterologist/hepatologist or transplant surgeon you are invited to participate in an anonymous survey. The objective of our study is to evaluate “increased risk” donor livers (increased risk for recent HIV, HBV, and HCV infections) as an option for transplant into pediatric candidates. The goal of the study is to better understanding why or why not “increased risk” donor livers are accepted/rejected in these patients. We would like to collect your perspective and experience with increased risk liver donations and pediatric candidates. We ask that you consider completing this anonymous online survey, which will take approximately 10 minutes of your time. Please make use of the spaces for comments to provide reflections on your experience and opinions on this matter. Your participation in this survey is completely voluntary. Please only complete the survey once, even if you receive a second request. This project has been reviewed and approved by the Institutional Review Board at the University of Nebraska Medical Center (IRB # 016-20-EX).

Thank-you in advance for your time! If you have any questions or concerns you are welcome to contact us (information below).

Sincerely,

Dr. Blaire Anderson
Abdominal Transplant Surgery Fellow
University of Nebraska Medical Center
blaire.anderson@unmc.edu
402-599-0265

Dr. Nathalie Sela
Abdominal Transplant Surgery Fellow
University of Nebraska Medical Center
nathalie.sela@unmc.edu
402-650-4982

Dr. Arika Hoffman
Assistant Professor
University of Nebraska Medical Center
arika.hoffman@unmc.edu
402-559-3434

Click here for survey

IPTA 2021

11th Congress of International Pediatric Transplant Association

An exciting and full Scientific Program is currently being put together for the 11th Congress of IPTA, which will be held in Prague on April 17-20, 2021. Please save the date and make sure to tell all your contacts! Registrations will go live in due course. Watch this space for more information.

If you are interested in becoming a sponsor of this meeting, please contact Isabel Stengler (TTS) at Isabel.stengler@tts.org.

TTS Announcements

We are delighted to confirm that IPTA will have a presence at the 28th International Congress of The Transplantation Society, September 12-16 2020, in Seoul, South Korea.

Our programming will include a pre-Congress session on September 13th from 8am-3pm, 1 SOTA, 1 EMW, and abstract sessions. We will publish more information on this event closer to the time.

Click here to visit TTS Congress website


December 2020

Holiday Greetings from Professor Mignon McCulloch, President of IPTA

Dear All

It is my privilege to be the President of a professional organization which has as our goal the advancement of science and practice to improve the health of children who require transplantation in the worldwide community, and to advocate for their rights.

As 2019 draws to a close and we enter the Holiday season, it is a good time to reflect on what we have achieved this year. The highlight has been the very successful IPTA 2019 Congress in Vancouver hosted by Anne Dipchand as President, with over 500 delegates, which was a wonderful opportunity for sharing of knowledge and networking with friends and colleagues.

The Scientific Advisory Committee (SAC) produced an excellent academic content under Catherin Parker’s wise guidance with the Local Organising Committee under Tom Blydt-Hansen. Amongst their other duties, they also produced spectacular weather in Vancouver for the duration of the meeting. A special thanks to Isabel Stengler and her team for ‘making it all happen’ and to Sondra Livingston, Robert Colarusso, and the rest of the TTS team for all of their efforts in making this a successful meeting.

Our journal Pediatric Transplantation has also had a successful year under the leadership of our new editors Burkhard Tönshoff and Sharon Bartosh. Since this meeting, our IPTA Council has had some new members rotate onto the Council to join our wise group to ensure collective international input. I am grateful to those who have rotated off and know that they have been available for ongoing input when needed, and I am also excited about the new members and the talents that they bring to the organisation.

The various IPTA sub-committees have been hard at work with new goals and objectives, amongst the highlights including:

  • Education Committee facilitating the first TTS-IPTA joint webinar on Epitope Matching;
  • Ethics committee producing thought provoking case discussions and planning ethics-related position statements;
  • Outreach committee relaunching their program and developing a collaborative program between Dallas, USA and Bangalore, India, launching in 2020 and exploring multi-lingual patient education resources;
  • Membership committee developing new initiatives to increase membership and planning new opportunities for enhanced engagement of members including senior and junior members interaction;
  • Allied Health committee providing an excellent pre-congress symposium at the IPTA 2019 meeting together with large numbers of Allied Health colleagues also attending the main congress, developing a survey and planning webinars in the future;
  • Publications committee producing our informative newsletters, planned development of a peer mentoring program, and collaboration with the editors of Pediatric Transplantation;
  • Infectious Disease committee continuing to be prolific in their aims to spread knowledge about ID in pediatric transplantation with a successful EBV consensus meeting, a number of publications including a PJP survey, Live virus vaccines as well as collaboration with IPTA colleagues across the globe;
  • We would also take this opportunity to welcome our newest committee, the Communications committee, who are responsible for developing our social media communications as well as the optimization of a newer IPTA Website.

I would like to thank the IPTA Council as well as the Committees and their respective chairs for being so active and providing valuable input into our organization.

We look forward to our next IPTA congress, 17 – 21 April 2021 in Prague, and thank Lars Pape and George Mazariegos, together with Catherin and Isabel from TTS, who are already hard at work with the SAC in planning this meeting, as well as our local host, Tomas Seeman.

Finally I would like to thank the Executive Committee with Anne Dipchand (Past President) as a wise counsel, Carlos Esquivel (President Elect) for his enthusiasm and support and Lars Pape (Secretary/Treasurer) for his fresh ideas and treasurer input over this year.

I would also like to thank Katie Tait from TTS for her significant administrative support and never-ending cheerfulness.

On behalf of this group, I would like to wish all our members a Happy Holiday season hoping that you do get some ‘time-out’, and especially wishing you special time with your loved ones.

Thank you for all you do in your daily capacity to improve the health of all the pediatric patients in your care, and furthering the mission of our society.

May you all have an exciting start for 2020!

Best wishes

Mignon McCulloch
IPTA President


TTS 2020

We are delighted to confirm that IPTA will have a presence at the 28th International Congress of The Transplantation Society, September 12-16 2020, in Seoul, South Korea.

Our programming will include a pre-Congress session on September 13th from 8am-3pm, 1 SOTA, 1 EMW, and abstract sessions. Please watch out for abstract submission deadlines. We will publish more information on this event closer to the time.


This newsletter’s literary highlights come from Katherine Twombley, Chief, Pediatric Nephrology Interim Chief, Pediatric Neurology, Medical Director, Pediatric Kidney Transplant, Medical Director, Acute Dialysis Units, Medical University of South Carolina

With a shortage of organs in the United States, many people are looking at way to increase decreased donor donation. In a recent article published in Pediatric Transplantation entitled “Crowdsourced analysis of factors and misconceptions associated with parental willingness to donate their child's organs,” Jones et al. took on this very tough but extremely important topic. They evaluated factors associated with parent’s willingness to donate their child’s organs. They sent out surveys using Amazon's Mechanical Turk (MTurk) Prime platform. They targeted 400 respondents and received 425.

Similar to previously reported data, about three quarters of respondents would consider donating their own organs, but only about 65% were actually willing to donate their child’s organs. Unfortunately, less than half of the respondents believed that declaring someone brain dead means that they are dead and lower income respondents were more likely to have this belief. 

Black respondents were 5.3 times more likely compared to White respondents and Hispanic respondents were 2.24 times more likely compared to White respondents to think that doctors are “stealing” organs from patients.  Black (4.97 times) and Hispanic (2.18 times) respondents were also more likely than White respondents to believe that doctors are declaring patients brain dead based on their skin color or how much money they have. The odds of continuing to have this belief decreased as income increased.

This study highlights the persistent mistrust that some racial and ethnic groups have toward doctors. These beliefs are deeply rooted in past mistreatments as the authors point out (Tuskegee syphilis experiment, Tucker’s Heart, etc.), and we as a community need to make every effort to not only understand these perceptions, but also work hard to address and educate patients about these beliefs.

With the growing use of internet and social media, comes a plethora of misinformation. It is sometimes hard for families to know what information is fake. Interestingly, respondents that had a family member declared brain dead in the past were more likely to donate organs. This really emphasizes the value of what good communication and education with families can do. Future studies will need to look at the best methods of education and communication with families of different socioeconomical and racial backgrounds to improve the relationships we as doctors have with our patients. 


Ethics Case: Minors as living donors

Glenda Moonsamy
Charlotte Maxeke Johannesburg Academic Hospital, Department of Paediatrics and Child Health
University of the Witwatersrand, Faculty of Health Sciences
Johannesburg, South Africa

Case study:

A female baby was born to teenage parents with bilateral multicystic dysplastic kidneys and renal failure. Her family was counselled with respect to her condition and poor prognosis immediately after birth. Both her parents were scholars. Her mum was 16 and dad was 17 years old respectively. However, both parents had supportive extended families even though their socio-economic status was poor. The parents had also ended their relationship prior to the birth of the baby. The mum and her family were the primary caregivers.

Despite her renal failure, the baby thrived and at the age of 6 months, after careful consideration, it was decided that she be initiated onto peritoneal dialysis. The year post dialysis was difficult, with the child developing multiple bouts of peritonitis and having a short period of intermittent hemodialysis. She eventually settled on peritoneal dialysis and reached a weight suitable for dialysis at 2 years of age. During this period, despite the mum attending school full time, she and her family were very compliant, responsible and demonstrated unwavering support for their little girl. The parents were again counselled with respect to transplantation and being potential related living donors, to which they both agreed. In Johannesburg, the donor age requirement is 21 years.

Her case was presented to the renal transplant panel and after some deliberation, she was accepted for both a related living donor and cadaver transplant. Her dad was a blood group match and was worked up as a potential donor. He was 19 years old at the time and again, was still in school. However, during this period a cadaver donor became available and our patient was successfully transplanted.

Ethics comment:

In an era where the demand for organs outweighs the supply, careful consideration of the potential for expanding the related living donor pool has to be taken into account. Using minors as donors is a possible but controversial solution. The KDIGO guidelines accept an age requirement of 18 years. But at 18 years (or even 21 years for that matter) are you mature enough to give an informed consent, identify the risks to yourself and decide on your moral obligation? The risks to benefit need to be carefully weighed in each individual case.

There are many variables contributing to the development of life skills and maturity, including life experience, personality, morals, values and even genetics. This makes an age criteria difficult. However, it is a necessary requirement in our circumstances when considering a potential living donor. It should be taken into account together with the other pre-requisites like psychological and social functioning to determine whether the minor is a mature minor with the appropriate level of neurocognitive and emotional development.

With respect to the case above, the situation is a bit unique, but does an unplanned teenage pregnancy award you such insight and maturity, despite being an emancipated minor? The birth of a child is certainly a life changing experience, and in this scenario, it was compounded by a baby with chronic kidney disease. The family’s investment into the baby’s care helped in assessing the situation but it did not make the decision to initiate dialysis or use the parents as related living donors any easier.


UPDATE FROM THE OUTREACH COMMITTEE

Dear IPTA Colleagues,

The Outreach Committee is pleased to announce that applications for the 2020 Outreach Program are open.  The program supports emerging centres that seek to develop or expand/enhance care in existing transplant programs.

Usually, an emerging centre will have identified a suitable supporting centre to assist them with this program; however it is possible the Outreach Committee can assist in this process.

The application package, guidelines and useful reference documents are available on the Outreach Program section of the IPTA website.

Application Deadline: February 28th, 2020

With many thanks,

Fiona Mackie
Chair, Outreach Committee


UPDATE FROM THE MEMBERSHIP COMMITTEE

Dear IPTA Colleagues,

The Membership Committee is interested in creating a database of expertise among our members, with the goal of highlighting the breadth of our membership and also utilizing the database as a resource for members looking to connect with others in their area for mentorship, collaboration, etc. We are also interested in gaining a better understanding of the diversity of languages spoken among our membership for future educational opportunities. Please email Katie Tait, katie.tait@tts.org, with the following information: 

  1.  Areas of expertise
  2. Languages spoken
  3. Are you interested in being approached to participate in future educational opportunities or to be contacted by members from other centres?

Many thanks for your support,

Cozumel Pruette
Chair, Membership Committee


EXCITING NEWS FROM ID COMMITTEE

Dear IPTA Colleagues,

The IPTA IDCARE committee has completed initiatives related to:
how to approach SOT candidates with active infections (https://www.ncbi.nlm.nih.gov/pubmed/30838753), review of recent CMV guidelines with pediatric-specific cases (https://onlinelibrary.wiley.com/doi/full/10.1111/petr.13276), and emerging mosquito-borne viruses and impact on transplant (https://www.ncbi.nlm.nih.gov/pubmed/30338634). Committee members have actively participated in consensus meetings related to the diagnosis, management, and prevention of EBV-associated PTLD, as well as an evidence review of live-attenuated virus vaccination in selected SOT recipients, with expert recommendations recently published (https://onlinelibrary.wiley.com/doi/full/10.1111/petr.13571). The IDCARE committee continues to work on various infectious disease topics including providing updates on influenza – infection and vaccination for this season, summarizing a multidisciplinary approach to the evaluation of diarrhea in solid organ transplantation recipients, assessing prophylaxis strategies for PCP and toxoplasmosis across pediatric SOT centers, reviewing infectious complications of asplenia, including optimizing prevention strategies, and summarizing the results of a survey regarding contemporary practice for live-attenuated vaccination in solid organ candidates and recipients. The IDCARE committee continues to welcome IPTA members to provide feedback for topics of interest and potential collaborative projects.

Many thanks,

Monica Ardura
Chair, ID Committee


IPTA READERSHIP SURVEY 
FOR READERS OF PEDIATRIC TRANSPLANTATION

Pediatric Transplantation is the official journal of IPTA. At the link below, you will find a survey created by the IPTA Publication Committee and IPTA Leadership regarding the journal. We hope to continue to improve the services the journal provides to you, our members. This survey will help us identify areas to expand or improve. We promise it will not take more than a few minutes to fill out.


TTS ANNOUNCEMENTS

IPTA-TTS WEBINARS

The first joint webinar between IPTA and TTS happened on November 22nd and was a success! This was the first in a series of 3 webinars. We hope to continue this valuable collaboration in the future. Please keep a look out for more news on these. They will be announced in the Newsletter and in the Tribune Pulse, as well as in other TTS-IPTA correspondence.

header

TITLE: EPITOPE MATCHING
FRIDAY, NOVEMBER 22, 2019 - 1:00 PM EST (MONTREAL TIME)

header

IPTA WEBSITE LAUNCH

We are pleased to announce that the new IPTA website has gone live! Please visit us at https://www.tts.org/ipta.

We welcome your thoughts and suggestions as to how to best optimize our website. Please email Katie.Tait@tts.org with any ideas.


On behalf of IPTA, we wish you a happy holiday season, with our best wishes for 2020!


September 2019

Message from IPTA President

Dear All,

I am really delighted to be part of this enthusiastic and active IPTA community and would like to thank Anette Melk and the Publications committee for putting this newsletter together, showcasing just some of the exciting projects that IPTA has been developing.

I would urge you all to Save the Date for IPTA 2021 in Prague.

Best wishes,

Mignon McCulloch
IPTA President


This newsletter’s literary highlights come from Lars Pape, Univ. Prof. Dr. Med., Hannover Medical School, MHH – Clinic for Paediatric Nephrology, Hepatology and Metabolic Disorders.

  1. R. J. Arasaratnam, I. Tzannou, T. Gray, P. I. Aguayo‐Hiraldo, M. Kuvalekar, S. Naik, A. Gaikwad, H. Liu, T. Miloh, J. F. Vera, R. W. Himes, F. M. Munoz, A. M. Leen
    Dynamics of virus‐specific T cell immunity in pediatric liver transplant recipients. Am J Transplant 2019; 18(9): online first.

    In this manuscript the authors describe the clinical course of EBV, CMV, HHV6 and BKPyV specific T cells in children after pediatric liver transplantation. This manuscript is the first to prove in children after liver Tx that Virus specific T cells can be a useful tool in monitoring the cellular immune response to different viral disease dependent on change of immunosuppression and implementation of antiviral therapy. Future interventional trials will have to prove the additional value of this monitoring tool for infection control and graft survival.

  2. Bonthuis M, Groothoff JW, Ariceta G, Baiko S, Battelino N, Bjerre A, Cransberg K, Kolvek G, Maxwell H, Miteva P, Molchanova MS, Neuhaus TJ, Pape L, Reusz G, Rousset-Rouviere C, Sandes AR, Topaloglu R, Dyck MV, Ylinen E, Zagozdzon I, Jager KJ, Harambat J.
    Growth Patterns After Kidney Transplantation in European Children Over the Past 25 Years: An ESPN/ERA-EDTA Registry Study. Transplantation 2019 Apr 1.

    This manuscript shows in more than 3400 European pediatric kidney recipients differences in growth patterns linked to the country they come from. Only a little more than half of the children have normal height SDS values. Especially the youngest children hat the most severe growth retardation and growth hormone was not routinely used in many patients of this cohort. Additionally, no follow-up growth could be determined in children transplanted above an age of 12 years. This paper is therefore an important contribution that should enforce all of us in early use of adequate nutrition and growth hormone in chronic renal failure in order to improve final height of children before and after kidney transplantation.

  3. Yevgeniya Atiskova, Simon Dulz, Kaja Schmäschke, Jun Oh, Enke Grabhorn, Markus J. Kemper, Florian Brinkert
    Oxalate retinopathy is irreversible despite early combined liver‐kidney transplantation in primary hyperoxaluria type 1. Am J Transplant 2019; (18)9: online first.

    This manuscript evaluated the course of oxalate retinopathy in children before and after combined pediatric Liver and Kidney Transplantation. The authors could show that time to transplantation was associated with worse oxalate retinopathy and that no improvement of oxalate deposition could be found after transplantation. Therefore, this paper underlines the need for early diagnosis of Hyperoxaluria combined with early interventions as Vitamin B6 therapy, combined peritoneal- and hemodialysis, combined Liver- / Kidney Transplantation as well as new emerging therapies as Oxalobacter perfringens or gene therapeutics in order to inhibit the development of systemic oxalosis as much as possible.


Dear IPTA Colleagues,

Would you like help from senior members to refine your research question or review your manuscripts to increase likelihood of publication? The Publications and Communications Committee would like to invite you to participate in the Peer Mentoring designed to increase access to experienced reviews. We would like to offer to participants a chance to have a dialogue with those experienced in the publication process prior to final submission. Responsibilities of your mentor would include reviewer style feedback to the mentee and availability for subsequent questions. Mentors would also be available to refine language to meet standards for publication, especially for non-native English speakers. We are also looking for suggestions of names of others who might be interested and encourage junior faculty and allied health members to join!

If you are interested, please send your name, email, and any specific areas of research focus to katie.tait@tts.org.

Thank you in advance for your support,

Peer Mentoring Workgroup, IPTA
Chesney Castleberry, Workgroup Leader, IPTA Publications Committee


Dear IPTA Colleagues,

The Allied Health (AH) held its first all day pre-congress symposium entitled ‘Improving Outcomes in Pediatric Transplant: A Collaborative and Comprehensive Approach to Care’. It was a great success with over 60 attendees from 8 different countries in attendance including nurses, social workers, psychologists, pharmacists, occupational therapists, physiotherapists, dietitians, transplant coordinators, chaplains, students and researchers from various disciplines! The symposium included amazing speakers and panel discussions covering a broad range of topics including:

  • The Family in Stress: Assessment, strategies and outcomes
  • Avatars for Adherence? Utilizing the digital world to improve outcomes
  • Back to Basics: Talking instead of texting
  • Social Media: Friend or foe (debate)
  • Sex, Drugs, Rock 'n roll: Lifestyle guidelines
  • The Role of Palliative Care in Paediatric Transplantation: A panel discussion

Please log in to the congress website to see recordings of the sessions!

In addition, over 70 Allied Health delegates registered for the congress. From Allied Health, there were 6 abstracts presentations, 8 mini-abstract presentations, 11 posters presentations and interactive workshops on the following topics:

  • Nutrition and Oral Feeding
  • Frailty as a Concept in Pediatric Transplantation
  • Interventions and Outcomes in Transition: Engaging Adolescents in the Transition Process
  • Ethical Issues in Pediatric Transplantation: When a Patient is No Longer a Transplant Candidate

Finally, we also hosted an open Allied Health Professionals business meeting, followed by a social event, which provided a great opportunity to meet new colleagues, network and share ideas.

IPTA, TTS and CST Scientific Awards Winners

Congratulations to all the AH professionals whose great work and positive contributions to the organization were recognized through awards:

  • Beverly Kosmach-Park was awarded the Distinguished Allied Health Professional Award
  • Research awards were given for the following projects:
    • Anna Gold - Early School Age Cognitive Performance Post Pediatric Heart Transplantation
    • Catherine Patterson - Neurodevelopmental Motor Outcomes in Young Children Pre and Post Liver Transplant
    • Taylor Melanson - Prevalence and Consequences of Medication Non Adherence in Pediatric Kidney Transplant Recipients in the United States 2005-2015
    • Jenny Velasco - Overweight and Obesity Prevalence in Children After Transplant: Short and Medium Term Evolution
    • Robin Deliva - Neurodevelopmental Outcomes in Young Heart transplant recipients
    • Mar Miserachs - Standardized Feeding Protocol Following Pediatric Liver Transplantation – A Pathway for Improved Nutritional Care
AHP Committee Initiatives for 2019-2021
  1. Allied Health Membership and Focus Survey
    To describe the prevalence, diversity and clinical practice focus of AH team members within each centre globally. This information will serve as a foundation to help inform and develop a greater understanding of multi-disciplinary team composition, and frameworks regarding professional practice. Watch your inbox for a survey coming later 2019!

  2. Maintain regular communication with Allied Health
    To continually update the Allied Health Professional page on the IPTA website including regular profiling of AH members, update of committee initiatives and membership benefits. Check out our webpage for upcoming features including ‘Get To Know Your AH Colleagues’, with member profiles every two months and updates on AH related research projects.

  3. Continuing education with AH members through the development of a series of webinars
    To develop a series of webinars covering a range of relevant AH topics and drawing upon the expertise of members. The topics for these webinars will be informed by the AH survey results and direct feedback from our members during the IPTA 2019 Congress. Stay tuned!
Upcoming Goals for IPTA 2021 Congress (Prague, Czech Republic)

Plenary and State-of-the Art presentations on AH topics is currently in the planning phase! Be sure to save the date for Prague 2021!

Many thanks for your support,

Anna Gold and Jenny Wichart
Co-Chairs – IPTA Allied Health Professional Committee


Please find this update on Pediatric Transplantation from the Editors-in-Chief Sharon Bartosh and Burkhard Tönshoff.

The Author Guidelines for Pediatric Transplantation have recently been revised (click here). There you will also find the respective links to a number of Research Reporting Guidelines such as CONSORT for randomized trials, STROBE for observational studies, PRISMA for systematic reviews and CARE for case reports, beside others. Accurate and complete reporting enables readers to fully appraise research, replicate it, and use it. Authors are encouraged to adhere to recognized research reporting standards. The EQUATOR Network has collected more than 370 reporting guidelines for many study types (click here to visit the website).

Pediatric Transplantation offers the publication of Special Issues such as a series of articles derived from a consensus conference, with all review articles on a particular topic published in one issue. If you plan such a conference, consider to publish the consensus document and/or the respective review articles in our journal. Please contact the Editors-in-Chief Sharon Bartosh and Burkhard Tönshoff beforehand (smbartosh@wisc.edu, burkhard.toenshoff@med.uni-heidelberg.de).

IPTA Readership Survey for readers of Pediatric Transplantation>

Pediatric Transplantation is the official journal of IPTA. At the link below, you will find a survey created by the IPTA Publication Committee and IPTA Leadership regarding the journal. We hope to continue to improve the services the journal provides to you, our members. This survey will help us identify areas to expand or improve. We promise it will not take more than a few minutes to fill out.

Thank you!
IPTA Publication Committee and IPTA Leadership


July 2019


Message from Dr. Mignon McCulloch

Dear IPTA members and attendees of the IPTA 2019 Congress,

We would like to thank you for your part in attending and participating to make the IPTA 2019 Vancouver Congress such a hugely successful Congress and opportunity to network with friends and colleagues in the beautiful city of Vancouver. Learning in such a beautiful environment was not a hardship.

If you didn’t get the chance to join this time around, we hope that you can join us in Prague in 2021. Furthermore, if you are a member of IPTA, you can access the recordings via our section website. You are able to watch the talks and presentations HERE (member login required).

We would like to share with you some of the interesting facts from this meeting
  • We welcomed 522 participants from 36 countries.
  • The Congress started with a special opening address and blessing by Elder Roberta Price.
  • Totem poles watched over speakers as they shared knowledge with friends and colleagues.
  • Pre-meeting symposia including a Writing Course workshop, Foundations in Pediatric Transplantation “long-term outcomes” and a first-ever all-day Allied Health Symposium on Improving Outcomes in Pediatric Transplantation took place on May 4.
  • We remain very grateful for generous sponsorship from UPMC Children’s Hospital of Pittsburgh, Astellas, One Lambda, Stanford Children’ Health & Lucile Packard Children’s Hospital Stanford, Dr. Ken Citron Charitable Trust and Bryce Cormier Memorial Fund as well as all our many collaborating hospitals & non-profit organizations.
PROGRAM HIGHLIGHTS AT A GLANCE
  • 323 abstract submissions from 34 countries
  • 115 invited speakers from 13 countries
  • 6 Plenary Symposia
  • 5 State-of-the Art Presentations
  • 3 Pre-Congress Symposia
  • 16 Interactive Workshops
  • 21 Oral Abstract Sessions
  • 3 Poster Sessions and
  • 2 Morning Industry Symposia
  • Abstracts were published in Pediatric Transplantation Journal

We look forward to welcoming you to the next IPTA Congress in Prague, Czech Republic. Please mark your calendars: April 17-20, 2021.

Until then… please remain involved in our organization by looking out for our newsletters, joining us as a member, and visiting our website.

Best wishes,

Mignon McCulloch
IPTA President and IPTA 2019 Co-Chair

Carlos Esquivel
IPTA President-elect and IPTA 2019 Co-Chair


Once again our Question Bank returns to keep you on your toes. We thank Alicia Chapparo, Luca Dello Strologo and Stephen Marks for these. Test your skills with these questions.

Click HERE to proceed


Glenda Moonsamy
Charlotte Maxeke Johannesburg Academic Hospital, Department of Paediatrics and Child Health
University of the Witwatersrand, Faculty of Health Sciences
Johannesburg, South Africa

Case study:

This is a case of a 13 year old boy born with multiple congenital abnormalities of the kidney and urinary tract (CAKUT). He had an absent right kidney, with hydronephrosis and an ureterocoele in the left urinary tract. In addition to this, he was also found to have spina bifida occulta (L5-S3) with a neurogenic, septated bladder. After multiple surgical procedures to reconstruct the bladder and remove the ureterocoele, self intermittent clean catheterization (SICC) was initiated. He also had ADHD, anxiety disorder, delayed neurocognitive function and extreme needle phobia that was being managed with medication and psychotherapy via the neurodevelopment and child psychology unit. Phlebotomy was difficult but regular sessions with the psychologist made the process much easier but unanticipated phlebotomy or interventions were not well received.

At the age of 11 years, he went into end stage kidney disease and by then his mother was being worked up as a renal transplant donor. However, at that time, despite extensive counselling, the child vehemently refused dialysis, opting rather to wait for mum’s workup to be completed and a renal transplant be performed. His refusal was such that, to quote his words, “I’d rather die than go onto dialysis”.

The mum’s workup took longer than anticipated and he subsequently developed complications of end stage kidney disease, and dialysis was indicated. Again, it took a considerable amount of counselling and psychotherapy, but he was successfully initiated onto automated peritoneal dialysis. He was also worked-up, presented to the renal transplant panel and listed successfully for both a cadaver and related donor kidney transplant (a psychological assessment was included).

After being on the cadaver list for approximately one year, our patient was called up for a cadaver transplant. His mum was going through a difficult period, having just lost her dad & they had difficulty arranging transport to the hospital as well, so the kidney was declined. A month later, he was called up again. This time however, he had a psychological breakdown and refused to come to the hospital for the transplant. His mum confirmed that his therapy sessions were not as consistent as they were before.

We have since suspended him from the transplant list and have reconsidered his suitability for transplant. His mum, who was initially very keen on donating her kidney, has also become more apprehensive with respect to her child’s psychological state. He continues receiving therapy and dialysis and we hope in time may develop the neurocognitive and psychological maturity required for successful transplantation.

Ethics commentary:

Renal transplantation is associated with significant psychosocial stress both before and after transplantation. Many patients and their families suffer from varying degrees of post-traumatic stress during this period. They all require a significant amount of supportive care, hence the need for a multi-disciplinary team approach.

A child with a pre-existing mental disorder requiring renal replacement therapy thus poses an even greater need for therapy and support. Psychosocial assessments are an essential component of the framework for transplant suitability. There is a paucity of information regarding the transplantation of children with mental illness.

Mental illness in children can be a diagnostic challenge and a childhood diagnosis often confers a poorer prognosis. With respect to transplantation, I think the processes we apply currently, where each child is assessed on an individual basis, seems to be the best approach. The biggest challenges faced are compliance and worsening of the current mental state.

The above case is a glimpse in the arduous journey travelled by the patient, family and health care providers. Transplantation is difficult with the best of patients but in those patients with mental illness, it makes us question the suitability of such patients even if a related living donor is available.


EBV Consensus

The IPTA Infectious Diseases Committee continues to be vested in initiatives in pediatric transplant infectious disease related to Clinical care, Advocacy, Research, and Education (ID-CARE). This year, the committee has been active in providing recommendations regarding the approach to the solid organ transplantation (SOT) candidate with an active infection, pediatric-specific questions related to CMV infection and disease, and in IPTA-sponsored consensus conferences related to live virus vaccination and Epstein-Barr virus (EBV)-associated post-transplant lymphoproliferative disorder (PTLD) after pediatric SOT. The EBV/PTLD consensus conference was a major collaborative effort involving more than 30 participants from the United States, Canada, and Europe organized into 4 working groups addressing the diagnosis, diagnostic tools, management, and prevention of EBV disease and PTLD in children undergoing SOT. These 4 working groups groups held frequent teleconferences to review data in an effort to identify and preliminarily address key questions in advance of the face-to-face meeting which was held in Nashville, Tennessee in early March 2019. At this meeting, participating members of the consensus conference reviewed and tentatively agreed upon proposed recommendations addressing numerous pediatric-specific issues issues relating to EBV and PTLD. It is anticipated that 5 manuscripts addressing the methodology and recommendations of the consensus conference will be published in Pediatric Transplantation in the relatively near future. Ongoing and upcoming initiatives include assessing practice patterns and providing evidence-based recommendations related to: vaccination, including vaccine hesitancy, yearly influenza vaccine update, and live virus vaccination after pediatric solid organ transplantation; evaluating antimicrobial prophylaxis strategies, that are pathogen specific (e.g. Pneumocystis) and organ-specific (e.g. liver); and at the request of the IPTA council, providing strategies for infection prevention in patients with asplenia. As always, ID-CARE committee members are eager for input from and ongoing collaboration with other IPTA committees.

April 2019


Message from Dr. Anne I. Dipchand

Dear Colleagues,

It is hard to believe that it has been 2 years since we all saw each other at IPTA 2017 in Barcelona! It has been a very productive two years for IPTA. The last two years saw significant change to the organization starting with a move to a new management company under the umbrella of TTS while maintaining our status as an independent association. This has been an excellent move for IPTA, has strengthened us financially, and opened the door for many more collaborations with TTS and other professional transplant organizations. Our Journal saw a transition to new editors, Burkhard Tonshoff and Sharon Bartosh, who have been busy implementing new initiatives to enhance Pediatric Transplantation.

Our committees have been very active in the last 2 years. The IPTA ID CARE Committee has continued to be very prolific, hosting a live vaccine consensus meeting, updating the pediatric CMV guidelines, co-hosting an EBV/PTLD symposium, amongst other clinical academic pursuits which will guide our practices for the foreseeable future. The IPTA Allied Health Committee has contributed significantly to programming for IPTA 2019 including a full day pre-symposium in addition to surveying Allied Health colleagues widely in order to determine how best to provide for this important part of IPTA membership. The IPTA Education Committee has continued providing educational programming to multiple meetings including the successful IPTA Regional Meeting in Costa Rica, developing a new Foundations in Transplantation pre-symposium for IPTA 2019, and contributing literature reviews to the newly established IPTA Quarterly Newsletter. The brand new IPTA Ethics Committee has established Ethics Cases which have been circulated in the newsletter in addition to carrying out an Ethics Survey – the results of which will be shared at IPTA 2019. The IPTA Outreach program has been completely revamped and received multiple applications for consideration. The IPTA Membership Committee reassessed and recommended a reduction in dues which took effect in 2018 in addition to establishing a Question Bank and undertaking other membership initiatives. The IPTA Nominations Committee facilitated the biggest election with the most number of candidates in IPTA history – the results of which will be announced at this meeting. The IPTA Awards Committee reviewed multiple award nominations for this year and these too will be presented during the Congress.

It has also been 2 years since I had the honour of starting my term as the president of the IPTA. The IPTA Council has worked hard on behalf of the association and are now embarking on a strategic planning process to establish the direction for IPTA for 2020-2023… stay tuned for more information.

I can truly say that it has been a pleasure and a privilege to serve this amazing organization. I remain awed by the commitment of IPTA members to children around the world in need of and following organ transplantation, and to each other as colleagues and friends.

I look forward to continuing to advocate for the children and IPTA as an organization and to continuing to grow together to achieve our common goals.

Sincerely,

Anne Dipchand
IPTA President


Many of our members have been requesting information on how to access Pediatric Transplantation’s electronic table of contents. Below are instructions on how to subscribe now!

With each newsletter, we plan to have an IPTA member highlight important recent publications in an area of general interest. Since all our members have access to our journal PEDIATRIC TRANSPLANTATION, this feature will highlight reports, from other journals, which may not be readily available to all our members. As with this inaugural edition, reports of adult data that may have relevance to our members may also be included. This newsletters’ literary highlights come from Sharon Bartosh, M.D., Chief, Pediatric Nephrology, American Family Children’s Hospital, University of Wisconsin.
A systematic review of immunosuppressant adherence interventions in transplant recipients: Decoding the streetlight effect (DL 581) IMMUN
A randomized clinical trial of age and genotype-guided tacrolimus dosing after pediatric solid organ transplantation (DL 469) IMMUNO
Anellovirus loads are associated with outcomes in pediatric lung transplantation (DL 321) ID/LUNG
A prospective, randomized, controlled trial of eculizumab to prevent ischemia-reperfusion injury in pediatric kidney transplantation (DL 298) KIDNEY
Psychosocial predictors of medication non-adherence in pediatric solid organ transplantation: A systematic review (DL 275) QOL/PSYCHOSOCIAL
Cytotoxic T cell lymphocyte therapy for PTLD after solid organ transplantation in children (DL 270) IMMUNO
Epidemiology and outcome of chronic high EBV viral load carriage in pediatric kidney transplant recipients (DL 252) ID/KIDNEY
Vaccines in pediatric transplant recipients; Past, present and future (DL 241) ID
Pediatrics and donor-derived disease in pediatric transplant recipients: The US OPTN experience (DL 217) ID
Impact of flow PRA on outcome in pediatric heart recipients in modern era: An analysis of the Pediatric Heart Transplant Study data (DL 189) HEART
Transient elastography for non-invasive evaluation of post-transplant liver graft fibrosis in children (DL 176) LIVER
Quantiferon-CMV assay: A potentially useful tool in the evaluation of CMV-specific CD8 T cell reconstitution in pediatric hematopoietic stem cell transplantation (DL 75) ID/STEM CELL

At this moment, nearly 2,000 children under the age of 18 are on the national transplant waiting list in the United States alone.

April is National Donate Life Month, where local, regional and national activities celebrate transplantation. People everywhere are encouraged to register as potential donors, and we celebrate those who have saved lives through the amazing gift of organ donation. National Pediatric Transplant Week is celebrated during the last full week of April, with a focus on children. During this week, we honor and remember pediatric organ donors and their families, share stories of success through hard work and innovation in the transplant community, and celebrate recipient patients and families. The overall goal is increasing awareness of pediatric transplantation, and ultimately ending the long waiting list for pediatric patients for transplants.

Please go to www.donatelife.net/pediatric-transplant-week for more details on how you and your institution can observe Pediatric Heart Transplant Week. Sample flyers are available for posting at your institution, as well as up to date public waiting list statistics and FAQs (Frequently Asked Questions). The website also offers simple graphics such as the one below that can be posted to your personal or institutional Facebook, LinkedIn, Twitter, or Instagram accounts. Help in your community by increasing pediatric transplant awareness! #KidsTransplantWeek


Would you like to include an event announcement in the newsletter? Some potential examples of this may include:

1. Event/meeting announcements
2. Job opportunities/postings
3. Requests for colleagues to join multi-center research collaborations

If you have any of these that you wish to include in the newsletter, please email to katie.tait@tts.org. Please note that in any announcement about events or job opportunities, no follow-up will be provided by IPTA – as such, full contact information for all of these events/opportunities should be included in the announcement. Please try to keep these relevant to the field of pediatric transplantation and pediatric organ failure.

December 2018


Dear Colleagues,

On behalf of the IPTA Council we would like say Season’s Greetings. In warm appreciation of our Association during the past year, we extend our very best wishes for a happy holiday season!

Sincerely,

Anne I. Dipchand
IPTA President


Waiting for a liver

This case focuses on a 2-year-old girl with biliary atresia and failed Kasai. Over the past 6 months, she had become progressively worse, with mucosal and gastric bleeding episodically. She developed end stage liver disease and cirrhosis. Due to feeding intolerance with enteral feeds, a central venous line was placed and parenteral nutrition was started. She was listed for a liver transplant.

She was admitted to the hospital for electrolyte imbalances and fluid shifts. This hospitalization lasted for 5 months, due to GI bleeds, sepsis and general deterioration. She had issues with ascites, hypotension consistent with cirrhosis, spontaneous GI bleeds and 2 episodes of sepsis. (She had pruritus and constantly scratched at her central line dressing).

Mom stayed in the hospital with the patient and worried that her daughter would not make it to transplant.

She continued to demonstrate signs of decompensated cirrhosis: coagulopathy, ascites, and hypoalbuminemia/hyponatremia. She continued to have worsening labs, increased work of breathing and large amounts of bleeding from the central line site. She received multiple blood products to correct labs with no effect. She was oliguric secondary to hepatorenal syndrome and intravascular hypovolemia. She was increasingly agitated and distressed.

Her tenuous course worsened overnight. The parents spoke with the team and made the decision to change her resuscitation status to Do not resuscitate (DNR). Dad boarded a flight to the hospital, so that he could be at her side, when she passed away. A police escort to the hospital was arranged.

Thirty minutes after the DNR order was placed, the transplant surgeon received a call that a liver was available to the patient. The liver was a match for the patient. Since only 30 minutes had passed, the patient had remained listed for a liver.

Ethical questions: In the setting of “high risk” transplantation, it is very difficult to quantify risk factors. In this case, since the patient had been made DNR, she would die if the transplant did not occur. Would you tell the parents that an organ was available? Would you proceed to the OR?

Distributive justice: The patient did not survive the transplant. As we think about distributive justice, how to fairly divide resources, should the liver have gone to this patient? Without enough organs available for everyone who needs one, should the liver have gone to a patient who had a better chance of survival?


Application deadline: February 28th 2019

The IPTA is pleased to announce the renewal of its Outreach Program, established to support centers that seek to develop new solid organ transplant programs or to expand or enhance the quality of care in existing programs. The success of the Outreach Programs is enabled by enthusiastic participation of sponsoring programs, who will partner with applicant centers and can provide knowledge, expertise and education.

Transplant Program Standards Development: In order to better understand requirements for establishing and supporting successful transplant programs, the IPTA Outreach Committee has developed a set of simple standards that may be used to evaluate transplant program needs. These standards are meant to support the development of best practices in centers seeking support by the IPTA Outreach Program, but may also serve as a reference for programs seeking their own program development.

See the details regarding the Outreach Program guidelines and application process in the documents.

Click HERE for more details.


2018 Symposium in Organ Transplantation in Children in Review

The 2018 Bi-Annual International Pediatric Transplant Association Fellowship Symposium in Organ Transplantation in Children took place on November 12-13, 2018 at the Crowne Plaza Corobici San José, Costa Rica.

The special IPTA activity served as an educational forum for clinical and research fellows in pediatric solid organ transplantation, and other allied health professionals and trainees who are planning a career in pediatric transplantation. 80 participants joined from 20 different countries from Europe, Asia, Latin America, Africa and North America.

The intensive training course, led by council members of IPTA, awarded scholarships to international fellows to present their abstracts. 50 fellows submitted abstracts, and the education committee scored them blindly, 25 fellows were selected to participate.

For the first time ever, delegates were also invited to attend the symposium. They represented varying fields of pediatric transplantation including liver, lung, heart, psychology, psychiatry, adolescent medicine, and ethics among others. This diversity in content led to a very interactive experience and a high quality scientific program.

The scientific program was designed to deliver plenary lectures about broad aspects of transplantation, including immunology, vaccination, pre- transplant challenges and post- transplant complications of immunosuppression. There were interesting discussions that centered around case discussions on immunology issues, liver/intestine, heart/lung and kidney transplantation.

The presentations from the invited fellows were superb as they were well-prepared and led to engaging discussions. One such innovative and arousing session included a discussion on a potentially stunning way to increase donor supply “Organ donation after euthanasia in children and adolescents: Exploration of legal framework and medical suitability” by Jan Bollen and “Neonatal organ donation: A potential new donor source for cell and organ transplantation” by Emil Bluhme.

Faculty presentations were unique and insightful. Of particular note was the session of “Transplantation without Borders” whereby Mignon McCulloch’s talk “Pediatric transplantation in the developing world” and by J.P. Garbanzo who gave a candid and thoughtful lecture on the “Evolution of Pediatric Transplantation in Costa Rica”. Other lectures focused on advancing a career in pediatric transplantation with lectures that included writing grants and scientific articles for publication, as well as pursuing a well-balanced life in such a demanding field. The fellows were not afraid to engage with faculty and felt they built strong camaraderie with each other and the delegates. Trainees received feedback from the faculty, and enjoyed unique networking opportunities to discuss issues relevant to a career in pediatric solid organ transplantation.

The organization of the meeting was flawless both on the part of the IPTA organization team at The Transplantation Society, and the local IPTA organizers in Costa Rica. Dr. Olga Arguedas, CEO and Director of the Children’s Hospital in Costa Rica gave opening remarks and also planned a tour of the Hospital Nacional de Niños for all the participants. The symposium ended with the Fellows Dinner for everyone on at La Cascada Restaurant enjoying a typical Costa Rican dinner!


Want to stay up to date on transplantation? Want to test your knowledge? Here’s your chance!

The IPTA Question Bank is a new IPTA member benefit in which members will have access to new questions with each newsletter and access to additional questions and answers on the website. Each question will be accompanied by references to explain the correct and incorrect answers and it can be used as a teaching tool for students, residents and fellows as well.

Click HERE to procede.


Many of your members have been requesting information on how to access Pediatric Transplantation’s electronic table of contents. Below are instructions on how to subscribe now!
  1. Go to the Pediatric Transplantation homepage.
    https://onlinelibrary.wiley.com/journal/13993046

  2. Ensure that you’re logged in with your IPTA access:

  3. On the right side of the page, click on Get Content Alerts:

  4. You’re now subscribed! By default, you will receive an e-mail alert any time a new Pediatric Transplantation issue publishes as well as an alert any time new EarlyView (article published ahead of issue) content publishes. To change the frequency of EarlyView digest e-mails, click on the drop-down menu under Frequency and select

  5. To unsubscribe, check the box next to Pediatric Transplantation and select Unsubscribe From Alerts.


Registration fees are now posted on the website. You can go ahead and register for the main Congress, pre-meetings and social events.

Click HERE to register.



Newsletter Announcements – Open to the Membership

Would you like to include an event announcement in the newsletter? Some potential examples of this may include:

  1. Event/meeting announcements
  2. Job opportunities/postings
  3. Requests for colleagues to join multi-center research collaborations

If you have any of these that you wish to include in the newsletter, please email to sondra.livingston@tts.org. Please note that in any announcement about events or job opportunities, no follow-up will be provided by IPTA – as such, full contact information for all of these events/opportunities should be included in the announcement. Please try to keep these relevant to the field of pediatric transplantation and pediatric organ failure.

September 2018


IPTA 2018 CALL FOR NOMINATIONS

The IPTA Nominations Committee is seeking qualified candidates to be considered for open Councilor and Officer positions beginning in May 2019.

All applications will be reviewed by the IPTA Nominations Committee, who will present a final slate of candidate Officers and Councilors to the IPTA membership for the 2019 election.

The IPTA Nominations Committee welcomes nominations and applications from anyone who has been an IPTA member in good standing for at least 1 year. Service to IPTA on committees or special activities relevant to the society is an asset.

The deadline for online submission of applications is September 30th, 2018.


10th Congress of the International Pediatric Transplant Association

The planning of the 10th Congress is well underway and we are thrilled with the list of speakers that have confirmed their participation! The Plenary and SOTA speakers are listed in the online preliminary program at ipta2019.org. International collaboration is an important part of the IPTA 2019 Congress. We have actively pursued opportunities to partner with other transplant and pediatric organizations across the world. It is important that we all work together as a community to advance the science and practice of pediatric transplantation. The Vancouver Congress will showcase collaborative sessions between IPTA and the following organizations: European Society for Organ Transplantation (ESOT); American Association for the Study of Liver Diseases (AASLD); American Society for Histocompatibility & Immunogenetics (ASHI); the International Society for Heart and lung Transplantation (ISHLT); American Society of Transplantation (AST); The Transplantation Society - International CMV Consensus Group; American Society of Pediatric Nephrology (ASPN); Canadian Blood Services (CBS); American Society of Transplant Surgeons (ASTS), and more to come.


This newsletter’s literary highlights come from David M. Briscoe, MD. MRCP. Director, Transplant Research Program, Boston Children's Hospital and the Department of Pediatrics, Harvard Medical School, Boston MA.

  1. Seifert ME et al. Subclinical inflammation phenotypes and long-term outcomes after pediatric kidney transplantation. Am J Transplant 2018; 1-11 [PMID: 29766640]

    Despite improvements in short-term graft survival, long term outcomes following renal transplantation have not changed in over 20 years. One possibility is that standard clinical tests (e.g. creatinine and eGFR) only enable the diagnosis of intragraft disease once inflammation and fibrosis are present, which is more resistant to treatment. This is particularly relevant for pediatric kidney transplant recipients in whom creatinine-based eGFR is most imprecise because of the size mismatch between the child and the adult-sized kidney allograft. In this study, Seifert et al reported on the use of surveillance biopsies performed at 3 and/or 6 months post-transplant in a cohort of 120 pediatric recipients as a tool to identify subclinical inflammation (i.e. not detected using serum creatinine measurements). They also evaluated both the prevalence of pathological phenotypes seen on each biopsy and whether the use of surveillance had an impact on 5-year outcomes. This study represents one of the largest pediatric studies on surveillance biopsies to date. The major findings were: 1), that subclinical inflammation, either borderline or acute T cell-mediated rejection, was detectable in 36% of recipients by 6 months post transplant; 2), that the presence of subclinical inflammation in a surveillance biopsy is associated with increased risk for graft failure by year 5 post transplant; and 3), that treating subclinical rejection results in a better long-term outcome. They conclude that subclinical/borderline rejection is prevalent in pediatric recipients, that surveillance biopsies are safe and that intervention therapy has high potential to improve long-term outcomes. These findings also highlight the great need to monitor pediatric recipients with precision tools such as biomarker assays that support either the identity of high-risk patients or those recipients who are truly stable. It is also possible that precision biomarker assays may serve as a tool to identify pediatric recipients in need of surveillance biopsy.

  2. Faddoul G et al. Analysis of Biomarkers Within the Initial 2 Years Posttransplant and 5-Year Kidney Transplant Outcomes: Results From Clinical Trials in Organ Transplantation-17. Transplantation 2018 Apr;102(4):673-680 [PMID: 29189482]

    Several studies have demonstrated that increases in levels of the chemokines CXCL9 or CXCL10 in urine have a >70% sensitivity and specificity for association with intragraft inflammation/rejection. Their use as biomarkers has advantages to identify both low-risk stable patients as well as those at risk of graft failure. One of the larger studies evaluating urine biomarkers in the US enrolled 280 adult first kidney transplants as part of the NIH-sponsored Clinical Trials in Organ Transplantation (CTOT). This study revealed that urinary CXCL9 and/or other gene expression levels and assays including IFNy ELISPOT are excellent for detecting rejection. In the current study, Faddoul et al and the CTOT consortium reported the results of a follow up analysis of 5-year outcome data. Their analyses showed that early biomarker assays (within the first 2 years), including urinary CXCL9 levels, do not associate with long-term outcomes. In contrast, in this adult cohort they find that eGFR decline in the posttransplant period from 6 months to 2 years is a better surrogate of graft loss at 5 years. While this study highlights the utility of urine chemokine assays as biomarkers of rejection, it did not include pediatric recipients, in whom creatinine levels and eGFR are somewhat imprecise measures of early intragraft disease.

  3. Mincham CM et al. Evolution of renal function and urinary biomarker indicators of inflammation on serial kidney biopsies in pediatric kidney transplant recipients with and without rejection. Pediatr Transplant 2018 Aug;22(5):e13202. doi: 10.1111/petr.13202. Epub 2018 Apr 25. [PMID: 29696778]

    There is a great need to improve our ability to detect of subtle inflammation and subclinical rejection in pediatric renal transplant recipients. As discussed above (see Seifert et al), the use of surveillance biopsies can detect disease in over one-third of so-called ‘stable’ patients as assessed using standard creatinine-based clinical testing. This observation should serve as an added stimulus to advance the use of precision biomarkers in pediatric patients who are at risk of late diagnosis using current clinical assessment tools. To date, the search for reliable, sensitive and specific biomarkers has shown that the measurement of CXCL9 and CXCL10 in urine has high potential for utility as an early biomarker of intragraft disease. In this study, Mincham et al evaluated urinary CXCL10 levels in pediatric recipients as a follow up study from their group to evaluate longitudinal performance in the assessment of response to treatment. In this cohort, assays were performed at the same time as two consecutive renal biopsies, and urinary biomarker levels were correlated with pathology in a total of 49 biopsy pairs. Biopsy #1 was performed at a median of 11.7 months post-transplant and biopsy #2 was obtained 1.8 ± 0.8 months later. In their analysis the authors evaluated urinary CXCL10 levels as a ratio with urinary creatinine in order to enhance sensitivity. They also evaluated data on 134 unique metabolites according to a model previously reported by their group. Their major findings were: 1), that urine levels of CXCL10:Cr increase in association with rejection; 2), that levels decline ( P=0.01) following effective treatment of rejection; and 3), that low biomarker levels are present in patients without rejection. They also found that the metabolic measurements change directly in association with the degree of histological acuity on each biopsy. They conclude that urinary biomarkers associate with biopsy evidence of rejection in pediatric recipients, and that urinary levels of CXCL10:Cr are superior to serum creatinine as an index of histological disease.

Summary: Collectively, these three studies add strong support for the use of urinary biomarker assays as a precision tool in pediatric renal transplant recipients to identify: a), stable patients, b) patients in whom a surveillance biopsy is indicated, and c), to follow up the efficacy of an intervention treatment. Clinical trials are needed to further validate these possibilities and determine if the routine use of urinary biomarkers will advance care and outcomes in pediatric patients.


2019 IPTA Congress Awards

Nominations will open for the IPTA 2019 Awards on October 8. The selected candidates will be presented with their awards at the 2019 IPTA 10th Congress on Pediatric Transplantation.

IPTA Members are encouraged to nominate a colleague for any of the three awards being offered:

LIFETIME ACHIEVEMENT
Purpose: To recognize a member who has made outstanding contributions to the field of pediatric transplantation over the course of their career.

YOUNG SCHOLARS CAREER DEVELOOPMENT AWARD
Purpose:To recognize junior investigators who show scholarly promise, encourage them in their careers in pediatric transplantation and provide assistance to attend the IPTA Scientific Congress.

DISTINGUISHED ALLIED HEALTH MEMBER
Purpose:To recognize an Allied Health Professional member who has rendered years of faithful service to the Society and/or who has made a significant contribution to pediatric transplantation.


Outreach Committee Update

Outreach Program Renewal and Launch: The IPTA is pleased to announce the renewal of its Outreach Program, established to support centers that seek to develop new solid organ transplant programs or to expand or enhance the quality of care in existing programs. The success of the Outreach Programs is enabled by enthusiastic participation of sponsoring programs, who will partner with applicant centers and can provide knowledge, expertise and education. Details regarding the Outreach Program guidelines and application process can be found HERE

Transplant Program Standards Development: In order to better understand requirements for establishing and supporting successful transplant programs, the IPTA Outreach Committee has developed a set of simple standards that may be used to evaluate transplant program needs. These standards are meant to support the development of best practices in centers seeking support by the IPTA Outreach Program, but may also serve as a reference for programs seeking their own program development. They are meant to be adaptable to the specific circumstances of transplant centers around the world. These standards are being launched in association with the Outreach Program Renewal, and are available for reference on the IPTA website. We anticipate that these standards will need to be further refined and the Outreach Committee is looking forward to active feedback and is committed to updating the standards with input from the IPTA member community.

On behalf of the IPTA Outreach Committee
Tom D. Blydt-Hansen, MDCM, FRCPC
Associate Professor of Pediatrics, University of British Columbia
Director, Multi-Organ Transplant Program, BC Children’s Hospital


Dear IPTA Colleagues,

The overarching goal of the Peer Mentoring initiative is to facilitate and improve the quality of publications being sent by our membership to transplant journals, especially Pediatric Transplantation. One means of achieving this goal is to assist our membership, especially junior faculty and faculty from emerging transplant communities, in manuscript preparation. This will allow for these members to have dialogue with those experienced in the publication process prior to final submission.

We are seeking interested individuals who would be willing to help out with this new initiative. Responsibilities would include providing reviewer style feedback to the mentee prior to manuscript submission, and being available for subsequent questions. All members, including non-physician members, are encouraged to participate.

If interested, please send your name, email, and any specific areas of research focus to peermentor@iptaonline.org.

Thank you in advance for your support,

Peer Mentoring Workgroup, IPTA
Chesney Castleberry, Workgroup Leader



Newsletter Announcements – Open to the Membership

Would you like to include an event announcement in the newsletter? Some potential examples of this may include:

  1. Event/meeting announcements
  2. Job opportunities/postings
  3. Requests for colleagues to join multi-center research collaborations

If you have any of these that you wish to include in the newsletter, please email to mary.smith@tts.org. Please note that in any announcement about events or job opportunities, no follow-up will be provided by IPTA – as such, full contact information for all of these events/opportunities should be included in the announcement. Please try to keep these relevant to the field of pediatric transplantation and pediatric organ failure.

June 2018


Donate to IPTA Now! Your donation will be used to help IPTA to promote the advancement of the science and practice of transplantation in children worldwide and to serve as a unified voice for the special needs of pediatric transplant recipients.

DONATE NOW!


The International Pediatric Transplant Association (IPTA) is a professional organization of individuals in the field of pediatric transplantation. The purpose of the Association is to advance the science and practice of pediatric transplantation worldwide in order to improve the health of all children who require such treatment. The Association is dedicated to promoting technical and scientific advances in pediatric transplantation and to advocating for the rights of all children who need transplantation.

Our Goals...

  1. Promote the advancement of the science and practice of transplantation in children worldwide
  2. Promote research and provide a forum that highlights the most recent advances in clinical and basic sciences related to pediatric transplantation
  3. Serve as a unified voice for the special needs of pediatric transplant recipients
  4. Develop educational programs for pediatric transplant professionals in underserved regions of the world that enable children to have access to transplantation globally
  5. Become the international leader in generating and disseminating information in the field of pediatric transplantation through the publication of our journal, Pediatric Transplantation
Who is IPTA?
President: Anne I. Dipchand, Toronto, Canada
President-Elect: Mignon McCulloch, Cape Town, South Africa
Secretary Treasurer: Carlos Esquivel, Stanford, USA
Past President: Burkhard Tönshoff, Heidelberg, Germany

Councilors:
Stephen Alexander, Sydney, Australia
David Briscoe, Boston, USA
Alan Langnas, Omaha, USA
Debra Lefkowitz, Philadelphia, USA
Stephen Marks, London, UK
George Mazariegos, Pittsburgh, USA
Lars Pape, Hannover, Germany
Klara Posfay-Barbe, Geneva, Switzerland
Katherine Twombley, Charleston, USA

Journal Editors:
Sharon Bartosh, Madison, USA
Burkhard Tönshoff, Heidelberg, Germany

Committee Chairs:
Michael Green, Pittsburgh, USA (Infectious Disease)
Jonathan Johnson, Rochester, USA (Publications and Communications)
Kenneth Brayman, Charlottesville, USA (Publications and Communications)
Louise Bannister, Toronto, Canada (Allied Health Professionals)
Beverly Kosmach-Park, Pittsburgh, USA (Allied Health Professionals)
Katherine Twombley, Charleston, USA (Membership)
Tom Blydt-Hansen, Vancouver, Canada (Outreach)
Rohit Kohli, Los Angeles, USA (Education)
Richard Trompeter, London, UK (Ethics)
You Can Make A Difference!

Dear IPTA Colleagues,

The Publications and Communications Committee is happy to announce a new Peer Mentoring initiative. The overarching goal of this new initiative is to facilitate and improve the quality of publications being sent by our membership to transplant journals, especially Pediatric Transplantation. One means of achieving this goal is to assist our membership, especially junior faculty and faculty from emerging transplant communities, in manuscript preparation. This will allow for these members to have dialogue with those experienced in the publication process prior to final submission.

We are seeking interested individuals who would be willing to help out with this new initiative. Responsibilities would include providing reviewer style feedback to the mentee prior to manuscript submission, and being available for subsequent questions. All members, including non-physician members, are encouraged to participate.

If interested, please send your name, email, and any specific areas of research focus to peermentor@iptaonline.org.

Thank you in advance for your support,

Peer Mentoring Workgroup, IPTA
Chesney Castleberry, Workgroup Leader


The Ethics Case Series offers an open forum to share those cases we find ethically challenging in our own practice with the broader membership of our association. We would like to invite the membership of IPTA to assist us by submitting their own cases for inclusion in the IPTA newsletter’s Ethics Case Series to inform these discussions At this time there is no standardized format for submission, although we ask that you share your own insights into the cases you share. Please send your cases and thoughts about those cases to MFreeman3@pennstatehealth.psu.edu for consideration.

Michael Freeman, MD, MA (Bioethics)
Member, IPTA Ethics Committee

Ethics Case

A 12 year old male with a history of familial Hemophagocytic Lymphohistiocytosis (HLH), an immune deficiency disorder, was treated with an unmatched bone marrow transplant as an infant. Unfortunately, he developed graft vs. host disease (GVHD) after the bone marrow transplant, resulting in severe and progressive interstitial lung disease secondary to GVHD.

The parents pursued different treatment options for their son’s lung disease. He was ultimately listed for lung transplant. He had been relatively stable while listed, attending school 2 days/week. He was a very social boy and had many friends at school. He had an excellent understanding of his medical condition, a good sense of humor and overall social and cooperative demeanor. Parents were proactive and attentive and had the support of extended family that had assisted with both practical and emotional support over the years.

The patient also has mild gut and skin GVHD, GERD, seasonal allergies, nutritional insufficiency s/p G-Tube, chronic hypoxemia on 3-4L NC at baseline, and recurrent pneumothoraxes. He was admitted to the hospital in the setting of left sided pneumothorax s/p chest tube placement that was slow to resolve. The CT chest showed severe parenchymal and pleural fibrosis and several blebs, which put him at risk for further pneumothoraxes. The chest tube had an intermittent air leak, concerning for a possible bronchopleural fistula.

The patient's lung allocation score was > 50 when he was listed. Lung allocation scores range from 0-100, based on lab values, test results and disease diagnosis. There was no evidence of other organ dysfunction. Initially, he was ambulatory and hopeful. Since his score was quite high, it was hoped that he would receive lungs fairly quickly.

As the months passed, he remained on the waiting list and began experiencing significant, almost constant, coughing and dyspnea. A tracheostomy was placed as a bridge to transplant. He had difficulties in communicating easily after the tracheostomy and was frequently tearful, stating that he had been doing everything that the team had said and was not getting better. He had become increasingly frustrated with his prolonged hospitalization and need for more invasive procedures.

In the meantime, there was increased concern that his pleural disease has progressed to the point of making him a poor transplant candidate. His surgical risks were now much greater than in the past few months and the potential benefit had greatly decreased. It was felt that he would not survive transplant due to excessive bleeding. A team meeting was held and the decision was made to remove him from the lung transplant list.

When the team met with the parents about their son’s removal from the transplant list, the parents became very agitated and frustrated. The parents decided not to let their son know that he had been removed from the transplant list. They believed he would lose all hope if he learned that he is not listed. The parents were praying for a miracle. The team felt conflicted that the patient did not know that he had been taken off the list. However, the parent’s wishes were respected. He was discharged to a hospital closer to his home with a plan to limit interventions that would cause further discomfort. Symptom management was put into place to reduce his anxiety. He died 2 weeks later.

Ethics issues and challenges:

QUESTIONS TO CONSIDER:

Truthfulness and honesty: In the United States, patients under 18 years of age are considered minors. Before treating a patient less than 18 years of age, parents or legal guardians must sign consent to treatment. In decision making, parents are able to make decisions on behalf of their child, if they are less than 18 years old. In this case, should we honor the parents’ wishes, given that the patient had an excellent understanding of his medical condition? Does the decision of nondisclosure compromise values of transparency and respect for the patient (Bestor et al., 2018)?

Benefit of harm? The parents wanted to protect their son from the devastating news that he was no longer a candidate for lung transplant. The patient had been very involved and knowledgeable about his diagnosis and planned treatment. Was it in his best interest to be told that he was off the waiting list and would most likely die, so that he could prepare himself? Or, would telling the patient, against the parents’ wishes harm the family unit? If, as a healthcare provider, you are asked by the patient, “Am I dying?” would you collude with the parents?

Relational autonomy: This patient is not an adolescent; however the concepts of relational and in-control autonomy are to be considered. If this patient was 17 years old, would you go against the parents’ wishes and tell the patient that he was no longer a lung transplant candidate? Relational autonomy focuses on both the adolescent patient’s ability to make decisions, as well as the parents’ wishes. In-control autonomy does not focus on the adolescent patient’s participation, because the patient is not at an age where he is self-sufficient.


Dear IPTA Colleagues,

We would like to invite you to attend the TTS 2018 Congress in Madrid, Spain from June 30 to July 5, 2018 and would like to especially draw your attention to the IPTA Pre-Congress Workshop on Sunday, July 1 from 14:00 to 17:30 which has some really exciting topics with which to update your knowledge in the following fields:

  1. Update of the Key Paeds Tx papers in the last 2 years in the fields of both Basic Science AS WELL as Clinical Transplantation – saves you having to read the papers!
  2. Discussion around the Tricky Concept of Adherence Intervention Trials
  3. What are the Tumour Risks following Pediatric Solid Organ Transplantation
  4. Metabolic Syndrome/Obesity – something we all face

Please make sure you have registered for the Pre-Congress Workshop as we would like to really have an interactive discussion. Also consider for those in Europe, sending your fellows – ideally for the whole congress – but even for the Post-graduate course on June 30 and July 1 – before the start of the Congress.

If you already registered to the TTS 2018 Congress and wish to add the IPTA Pre-Congress Workshop to your registration, please send an email to info@tts2018.org.

If you have not registered yet and would like to attend the IPTA Pre-Congress Workshop onsite registration will be opened on June 30th.

We look forward to seeing you all there.

Best wishes,

Mignon McCulloch
Carlos Esquivel

On their behalf

TTS 2018 Congress Secretariat
27th International Congress of The Transplantation Society
505 Boulevard René-Lévesque Ouest, Suite 1401
Montreal, QC, H2Z 1Y7, Canada



IPTA 2018 Symposium in Organ Transplantation in Children

The International Pediatric Transplant Association is proud to feature a special Section activity: the 2018 Symposium in Organ Transplantation in Children: An educational forum for physicians, surgeons, and allied health professionals.

The focus of this symposium is aimed at clinical and research fellows in pediatric solid organ transplantation, as well as residents, and other allied health professional or non-physician trainees who are planning a career in pediatric transplantation.

The symposium will also provide state of the art information to established physicians, surgeons and allied health professionals who participate in the care of children before or after solid organ transplantation. In this case, a registration fee of $150/ person applies. Maximum capacity for established practitioners will be 50. THERE ARE 5 SEATS REMAINING TO REGISTER.



We continue to have an IPTA Member highlighting very recent publications in an area of general interest in the field of pediatric organ transplantation. This Newsletter’s Literacy Highlights come from Christian Benden, MD, FCCP, Medical Director Lung Transplantation, University Hospital Zurich and IPTA Education Committee Past Chair.

  1. Paraskeva MA et al. Outcome of adolescent recipients after lung transplantation: an analysis of the International Society for Heart and Lung Transplantation Registry. J Heart Lung Transplant 2018; 37: 323-331

    Given the fact that recipient adolescent age is linked to inferior outcome after non-lung solid organ transplantation, Paraskeva from the Alfred Hospital in Melbourne, Australia, and an international group of co-workers utilized the largest thoracic transplant registry to date (International Society for Heart and Lung Transplantation Thoracic Transplant Registry) to investigate results of patients aged 10 to 24 years of age undergoing lung transplantation (LTX) between 2005 and 2013. Adolescent age has recently been defined as 10 to 24 years of age based on biologic and sociologic transitions happening in that age period. Almost 10% of the nearly 25,000 LTX patients in the Registry belong to the predefined adolescent age group. Overall, the survival in adolescents was significantly inferior compared to adults. In particular, the outcomes of adolescents aged 15 to 19 years of age were poorer compared to adults but also compared to all other pediatric age groups. Given these discouraging results in adolescent LTX recipients, it is paramount to improve particularly the transition of adolescents from pediatric to adult transplant services, strengthening self-care and decision-making of the adolescent. The data by Paraskeva and co-workers highlight again the urgency for further research in this area of transplant medicine that applies across all solid organ transplant types, with the aim to develop interventional tools to help to improve outcomes in this challenging patient group.

  2. Urschel S et al. Neurocognitive outcomes after heart transplantation in early childhood. J Heart Lung Transplant (in press)

    As outcomes following pediatric heart transplantation have markedly improved in the recent decade, non-somatic issues and health-related quality of life are increasingly important. Simon Urschel and colleagues from the University of Edmonton, Alberta, Canada, investigated neurocognitive capabilities in pre-school-age children either with congenital heart disease (CHD) or those failing anatomically normal hearts (CMP) undergoing heart transplantation (HTX) ≤ 4 years of age between 1999 and 2011. This prospective, multi-provincial project was based on data from the Complex Pediatric Therapies Follow-up Program in Canada assessing neurodevelopmental and quality-of-life outcomes in children in several Western Canadian provinces who require severe medical interventions in early childhood. The scores acquired from the multi-faceted cognitive assessment included the Wechsler Preschool and Primary Scales of Intelligence and a test of Visual-Motor Integration (VMI), scores obtained at 54 ± 3 months post-transplant. Of 76 study patients, 61 survived to assessment, and data of 55 children were finally included in the study results, N=32 with CHD and N=23 with CMP, respectively. Pre-transplantation, children with CHD were sicker spending more days on ventilators and undergoing more previous surgery, and the transplant operation required longer cardiopulmonary bypass time. Post-transplant, the mean IQ scores of all children were lower than the average and even significantly lower in children with CHD with more frequent intellectual disability; VMI was also reduced in the sub-group of children with CHD. Overall lower scores were correlated with a more complicated pre- and per-HTX path. Results of this study point out the importance of outcomes beyond sheer survival, focusing on non-somatic aspects and health-related quality of life. The need for close and continuous neurodevelopmental assessment is vital, and children and their families have to receive support based on individual requirements, psychosocial and financial, respectively.




  3. Want to stay up to date on transplantation? Want to test your knowledge? Here’s your chance! Introducing a new IPTA member benefit, the IPTA question. Members will have access to new questions with each newsletter with additional questions and answers available on the website. Each question will be accompanied by references to explain the correct and incorrect answers. Can be used as a teaching tool for students, residents and fellows as well.

    SUBMIT QUESTIONS TO ADD TO THE QUESTION BANK BY EMAILING MARY.SMITH@TTS.ORG

    Click HERE to procede.



    Electronic Table of Contents (ETOC). As a result of a recent platform migration, Wiley expects that IPTA members will be able to receive content alerts for Pediatric Transplantation without any action needed by the reader. In the meantime, if you’re not receiving new content alerts from Wiley about Pediatric Transplantation content, you’re welcome to by visiting the journal’s home page with your IPTA access and clicking “Get Content Alerts.”

    Editorial board. Pediatric Transplantation is committed to establishing a rotation of members of the Editorial Board. The Editorial Board has recently been updated. As Editors-in-Chief, we express our gratitude to the previous Associate Editors for their service to the journal. Their contributions have helped shape the journal into something we are all very proud of. We are now working on the update of the other members of the Editorial Board. As IPTA is an international society, it is important to ensure global representation of the editorial board. If you are interested to serve on the editorial board, please send us your motivation and your CV with your academic accomplishments, burkhard.toenshoff@med.uni-heidelberg.de, smbartosh@wisc.edu

    IPTA writing project proposal form. On behalf of the IPTA Council, we welcome proposals for writing projects. As the majority of these writing projects will be meant for the society’s journal Pediatric Transplantation, all proposals will be reviewed by the IPTA Council with a recommendation made to the journal leadership. This form is now available on the website of Pediatric Transplantation. Please send inquiries to the chair of the IPTA Publications and Communications committee, johnson.jonathan@mayo.edu.

    CLICK HERE TO ACTIVATE CONTENT ALERTS FROM JOURNAL



    Beginning with the next newsletter, we will be able to include announcements submitted by IPTA members for various events. Some potential examples of this may include:

    1. Event/meeting announcements
    2. Job opportunities/postings
    3. Requests for colleagues to join multi-center research collaborations

    If you have any of these that you wish to include in the newsletter, please email to mary.smith@tts.org. Please note that in any announcement about events or job opportunities, no follow-up will be provided by IPTA – as such, full contact information for all of these events/opportunities should be included in the announcement. Please try to keep these relevant to the field of pediatric transplantation and pediatric organ failure.

March 2018


Donate to IPTA Now! Your donation will be used to help IPTA to promote the advancement of the science and practice of transplantation in children worldwide and to serve as a unified voice for the special needs of pediatric transplant recipients.

DONATE NOW!



IPTA 2018 Symposium in Organ Transplantation in Children

The International Pediatric Transplant Association is proud to feature a special Section activity: the 2018 Symposium in Organ Transplantation in Children: An educational forum for physicians, surgeons, and allied health professionals.

The focus of this symposium is aimed at clinical and research fellows in pediatric solid organ transplantation, as well as residents, and other allied health professional or non-physician trainees who are planning a career in pediatric transplantation.

The symposium will also provide state of the art information to established physicians, surgeons and allied health professionals who participate in the care of children before or after solid organ transplantation. In this case, a registration fee of $150/ person applies. Maximum capacity for established practitioners will be 50.


Welcome to the introduction of the IPTA Ethics committee which is a new group that was formed at IPTA 2017 in Barcelona. We are currently working on a survey, which aims to explore the ethical issues within the paediatric transplant community across the world. This is based on original work in the adult transplant population through TTS and we have developed this for paediatric practice through IPTA.

We aim to survey those who are IPTA members or those who have attended IPTA conferences. We want to hear from all members of the multi-disciplinary teams and from all grades – even professors can give their opinion. However, any survey is only as good as the completed responses from the members and so we are very grateful to you all for spending time doing this survey.

Please find below the website address for the SurveyMonkey questionnaire.

COMPLETE THE SURVEY

We will let you know the results as soon as we have them available.

Many thanks for all your help,

Dr Stephen Marks, Consultant Paediatric Nephrologist and Principal Investigator
Dr Debra Lefkowitz, Co-Principal Investigator
Dr Richard Trompeter, Chair of IPTA Ethics Committee
Drs Anne Dipchand and Mignon McCulloch, IPTA President and President-Elect



With each newsletter, we will continue to have an IPTA member highlight important recent publications in an area of general interest. This newsletter’s literary highlights come from Rohit Kohli, MBBS, MS, Chief, Division of Gastroenterology, Hepatology and Nutrition, Children’s Hospital of Los Angeles.

  1. Allway R et al. (2017) Bioequivalence between innovator and generic tacrolimus in liver and kidney transplant recipients: A randomized, crossover clinical trial. PLoS Med; 14(11): e1002428.

    Brand Tacrolimus vs. Generic Bioequivalence A recent study in PLoS Medicine reports on the bioequivalence between innovator (brand) and generic tacrolimus in adult liver and kidney transplant recipients. This was an 8 week randomized, crossover clinical trial with 35 renal transplant recipients and 36 liver transplant recipients. Within-subject variability was similar for the area under the curve (AUC) (range 12.11-15.81) and the concentration maximum (Cmax) (range 17.96-24.72) for all products. The within-subject variability was utilized to calculate the scaled average bioequivalence (SCABE) 90% confidence interval. The calculated SCABE 90% confidence interval was 84.65%-118.13% and 80.00%-125.00% for AUC and Cmax, respectively. Similar work in pediatric recipients is needed to address the specific pharmacokinetics of children and adolescents.

  2. UHsu EK et al. Analysis of Liver Offers to Pediatric Candidates on the Transplant Wait List Gastroenterology. 2017 Oct;153(4):988-995. doi: 10.1053/j.gastro.2017.06.053.

    Analysis: Pediatric liver offers on wait list in the USA A retrospective review of the US liver transplant wait-list over seven years resulted in identification of data for 3852 pediatric liver transplant recipients. To allocate liver donor organs to pediatric recipients the US system uses the Pediatric Endstage Liver Disease (PELD) scoring system and in addition a system for exceptions to the PELD is allowed through appeal. The authors report that amongst all the pediatric liver transplant candidates in the US that they reviewed, children who died or were delisted received a median 1 pediatric liver offer and waited a median of 33 days. Most importantly, of the children who died or were delisted, 45% died or were delisted with no offers. In a developed system such as that led by the United Network for Organ Sharing (UNOS) the death of a pediatric patient on the wait list with no offers is unconscionable. Therefore prioritization in the allocation for children and the future development of further improved risk stratification systems is required to eliminate wait-list mortality among children.



  3. Want to stay up to date on transplantation? Want to test your knowledge? Here’s your chance! Introducing a new IPTA member benefit, the IPTA question. Members will have access to new questions with each newsletter with additional questions and answers available on the website. Each question will be accompanied by references to explain the correct and incorrect answers. It can be used as a teaching tool for students, residents and fellows as well.

    Click HERE to procede.


    Dear IPTA Colleagues,

    The Publications and Communications Committee is happy to announce a new Peer Mentoring initiative. The overarching goal of this new initiative is to facilitate and improve the quality of publications being sent by our membership to transplant journals, especially Pediatric Transplantation. One means of achieving this goal is to assist our membership, especially junior faculty and faculty from emerging transplant communities, in manuscript preparation. This will allow for these members to have dialogue with those experienced in the publication process prior to final submission.

    We are seeking interested individuals who would be willing to help out with this new initiative. Responsibilities would include providing reviewer style feedback to the mentee prior to manuscript submission, and being available for subsequent questions. All members, including non-physician members, are encouraged to participate.

    If interested, please send your name, email, and any specific areas of research focus to peermentor@iptaonline.org.

    Thank you in advance for your support,

    Peer Mentoring Workgroup, IPTA
    Chesney Castleberry, Workgroup Leader


    Career Development and Mentoring

    While watching televised coverage of the Winter Olympics this year, my daughter asked me whether or not she could try the skeleton event. The skeleton, for those unaware, involves placing oneself on a sled and sliding down a bobsled track at speeds up to 80 miles/hr or 130 km/hr…. headfirst. My daughter is 5 years old. So, my typical parental answer of course was “maybe when you are older” – hoping she will forget and never ask me again. While thinking later about my answer, I realized that at some point, each one of those Olympic competitors had somebody say “yes” when they asked the same question and there was a team of people who identified their strengths and weaknesses, encouraged them, coached them, and they became Olympians.

    All of us have difficult moments early in our careers: The first patient that presents in a way different from anything you saw during your training (if this hasn’t happened to you yet, trust me, it will happen). The first difficult decision that you had to make about whether or not to list a child for transplant, and the conversation that had to take place with the child and their family. The first time a patient had a poor outcome on your watch. Even making the decision to pursue highly specialized training in transplant medicine.

    In all of these situations a mentor can be extremely valuable. Having someone to call to discuss that difficult patient, or serve as a sounding board when all isn’t going well in your position. The beautiful thing about pediatric transplantation, is that we are a small, tight-knit community of professionals who constantly work together to improve outcomes in children after transplant. During my first trip to an IPTA meeting, I had the opportunity to discuss difficult cases with senior colleagues in pediatric heart transplantation and have been fortunate to be able to foster these relationships: emails about difficult clinical situations, advice about a research project, career advice. There is no limit to the value of a good mentor.

    I am proud to say that the different committees of IPTA all understand the value of good mentorship, and are all tackling this idea of mentorship for our members. The Education Committee is publishing quarterly literary highlights in this newsletter, bringing attention to important papers that may not have caught our attention in the prior 3 months. The Outreach Committee is working on assessing outcomes of IPTA outreach activities and finding the most effective ways to bring transplant expertise to as many children as possible. The Publications and Communications Committee is planning a Peer-Mentoring workshop at the next IPTA Congress in Vancouver, and is starting work on an official program for mentoring writers to facilitate and improve the quality of publications submitted to our journal. The IPTA Council and the Education Committee have continued to support education activities such as the 2018 Symposium in Organ Transplantation in Children, a meeting focused on educating junior faculty and trainees. Please see the top portion of this newsletter for more information about this amazing educational opportunity.

    Starting your career in pediatric transplantation will be scary at times - there’s really no way around it. But, with a little help from your friends and mentors, we can continue to bring high quality care to the children of the world who need transplantation. Sometimes, all we need is someone to say “yes” and give us a little push down the track…

    I look forward to seeing all of you in San Juan and in Vancouver!

    Jonathan N. Johnson, MD
    Co-Chair, Publications and Communications Committee, IPTA


    Pneumosystis Jiroveci (PJP) Survey – Last Chance!

    Pneumocystis jiroveci (PJP) remains an important pathogen among organ transplant recipients. While there are published guidelines for PJP prophylaxis following transplantation, in practice, there is likely wide variability in the individual approach to prophylaxis. To better clarify the current practice among transplant centers, we are conducting a survey to assess the use of PJP prophylaxis following pediatric solid organ transplant recipients. The link to the survey is included in this edition of the Newsletter. It is approximately 12 questions and should take fewer than 10 minutes to complete.

    We appreciate you taking the time to COMPLETE THE SURVEY, and all responses will remain anonymous.
    Guidance on the Use of Live Vaccines in Solid Organ Transplantation

    IPTA partnered in this recent highly successful collaborative initiative held in Toronto on Feb 22-23 with world-leading experts on live vaccine use in pediatric solid organ transplantation. The aim is to develop an international consensus protocol to include standards relating (but not limited) to immunologic evaluation pre-vaccination, timing pre- and post-transplant for vaccination, and the optimal safety surveillance system. We expect that the meeting will result in a document and publication that will be used widely around the world. Stay tuned for further updates!


    Do not miss a single issue of Pediatric Transplantation! In order to get email reminders of new articles or issues, IPTA members must activate their journal content alerts. Click on the link below to log into your account and activate these alerts.

    CLICK HERE TO ACTIVATE CONTENT ALERTS FROM JOURNAL

December 2017



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IPTA 2018 Symposium in Organ Transplantation in Children

The International Pediatric Transplant Association is proud to feature a special Section activity: the 2018 Symposium in Organ Transplantation in Children: An educational forum for physicians, surgeons, and allied health professionals.

The focus of this symposium is aimed at clinical and research fellows in pediatric solid organ transplantation, as well as residents, and other allied health professional or non-physician trainees who are planning a career in pediatric transplantation.

The symposium will also provide state of the art information to established physicians, surgeons and allied health professionals who participate in the care of children before or after solid organ transplantation. In this case, a registration fee of $150/ person applies. Maximum capacity for established practitioners will be 50.


Pneumosystis Jiroveci (PJP) Survey

Pneumocystis jiroveci (PJP) remains an important pathogen among organ transplant recipients. While there are published guidelines for PJP prophylaxis following transplantation, in practice, there is likely wide variability in the individual approach to prophylaxis. To better clarify the current practice among transplant centers, we are conducting a survey to assess the use of PJP prophylaxis following pediatric solid organ transplant recipients. The link to the survey is included in this edition of the Newsletter. It is approximately 12 questions and should take fewer than 10 minutes to complete.

We appreciate you taking the time to COMPLETE THE SURVEY, and all responses will remain anonymous.
Ethical Case Request

Do you have cases that keep you up at night? Please share them with us!

Organ transplantation, particularly in children, is a process fraught with ethical questions. We routinely make decisions that can greatly impact our patients' lives with far from perfect information. How poor a prognosis does a patient have to have before he or she is no longer a transplant candidate? How should we weigh non-medical factors when making decisions? What allocation systems should we advocate for or emulate?

Just as encountering technically challenging cases can improve our clinical decision making, one way we can improve the ethical component of our care is by sharing those cases that keep us up at night, those cases we find ethically challenging in our own practice. We would like to invite the membership of IPTA to assist us by submitting their own cases for inclusion in the IPTA newsletter’s Ethical Case Series to inform these discussions. The Ethical Case Series, which debuted with September’s newsletter, offers an open forum to share these cases with the broader membership of our association.

At this time there is no standardized format for submission, although we ask that you share your own insights into the cases you share. Please send your cases and thoughts about those cases to mfreeman3@pennstatehealth.psu.edu for consideration.

Michael A Freeman, MD, MA (Bioethics)
Pediatric Nephrologist and Clinical Ethicist, Penn State College of Medicine, PA, USA
On Behalf of the International Pediatric Transplant Association Ethics Committee


Announcement of New Editors

IPTA is very grateful to Dr. Steven Webber for all of his service to IPTA. He was a founding Council member of IPTA, served as its third President, and for the last 5 years has served as Editor-in-Chief of Pediatric Transplantation.

Dr. Bartosh is a professor of pediatrics, Division Chief, pediatric nephrology and medical director of pediatric renal transplant at the University of Wisconsin, Madison, Wisconson. She has served on several IPTA committees and is currently active on the Education Committee. Dr. Tönshoff is a professor of pediatrics and pediatric nephrology, and the medical director of the pediatric renal transplant program in addition to being the Vice Chairman of the Department of Pediatrics at University Children’s Hospital, Heidelberg, Germany. He is currently past president of IPTA.

Drs. Burkhard Tönshoff and Sharon Bartosh will assume their roles as co-editors as of January 1, 2018. Stay tuned for more information in an upcoming editorial in Pediatric Transplantation.


Proposals for ipta-sponsored Writing Projects

The International Pediatric Transplant Association is dedicated to advancing the science and practice of pediatric transplantation worldwide, in order to improve the health of all children who require such treatment. To achieve this, part of our mission is to generate and disseminate information in the field of pediatric transplantation to our members and to the transplant community worldwide. This is primarily accomplished through the publication of important original research, review articles, commentaries and summaries to our journal, Pediatric Transplantation.

The journal leadership as well as the IPTA Council have and will continue to support our members in the creation of writing projects for the journal. We welcome proposals for IPTA-supported writing projects, including review articles, consensus documents, and other document types. All proposals will be reviewed by the Publications and Communications Committee, and reviews of the proposal will be provided to the author. Projects approved by the committee will then be reviewed by the IPTA Council with a recommendation made to the journal leadership. There may be overlapping ideas or project plans, and the committee will do our best to link up interested parties that may have similar proposals. Note that all projects will still have to undergo the standard peer-review process, and that not all projects will be approved.

On behalf of the members of the Publications and Communications committee, we look forward to working with you!

Please feel free to send us a note if any questions should arise - you can send inquiries to johnson.jonathan@mayo.edu. We would be happy to informally discuss any potential ideas you may have at any time.



IPTA Infectious Diseases Committee Update

The IPTA Infectious Diseases (ID) Committee continues to be actively involved in generating information and guidance to benefit our members and the children that we care for. In many cases, members of the committee are collaborating with other members of IPTA to carry out these projects and develop manuscript and guidance. Amongst our current initiatives, the Committee is working with members of IPTA who participated in the 3rd TTS Consensus Conference on CMV this last spring to provide a pediatric perspective on the soon to be published updated CMV Guidelines. It is anticipated that this will follow a “Question and Answer” format and will be published in Pediatric Transplantation in 2018.

At the request of the IPTA Council, the ID committee has also recruited a group of experts to provide a review manuscript describing the role of emerging mosquito borne viruses (e.g. Zika, Dengue, Chikagunya) and their impact on organ transplantation. We again hope to see this manuscript published in Pediatric Transplantation in 2018. Finally, the ID Committee is working with Dr. Steve Webber to take on the leadership and organization of an IPTA-sponsored Consensus Conference on the Diagnosis, Management and Prevention of EBV Disease and PTLD in Pediatric Organ Transplant Recipients. It is anticipated that the working groups of the Consensus Conference will be meeting through much of 2018 with a goal of a face to face meeting to finalize recommendations sometime in the Fall of 2018.


Recent publications of interest in the arena of antibody mediated rejection
  • Jordan, SC et al. IgG Endopeptidase in Highly Sensitized Patients Undergoing Transplantation. N Engl J Med. 377: 5: 2017

    This is a report of 25 highly sensitized patients transplanted in 2 countries (Sweden, USA), with IdeS in an open label phase 1-2 trial of desensitization and transplant. IdeS, a cysteine protease, is an IgG-degrading enzyme derived from Step pyogenes. It is an endopeptidase that cleaves human IgG into F(ab’)2 and Fc fragments inhibiting complement-dependent cytotoxicity and antibody-dependent cellular cytotoxicity. Immunosuppression protocols differed significantly between the 2 countries. IdeS was shown to reduce or eliminate donor-specific antibodies and permitted HLA-incompatible transplantation in 24 of the 25 patients. There was a single allograft loss due to hyperacute rejection and 5 patients developed antibody mediated rejection.
  • Choi J., et al. Assessment of Tocilizumab (Anti-Interleuken-6 Receptor Monoclonal) as a Potential Treatment for Chronic Antibody-Mediated Rejection and Transplant glomerulopathy in HLA-Sensitized Renal Allograft Recipients. AJT. 17. 2017

    This is a single center, open label report of 36 renal transplant patient with cAMR plus DSAs and transplant glomerulopathy who were treated as rescue therapy (progressive dysfunction having failed treatment with IVIg plus rituximab with or without PLEX), with monthly infusions of the anti-IL-6 receptor monoclonal antibody tocilizumab. Tocilizumab binds to both soluble and membrane-bound forms of the IL-6R and is approved by the FDA for treatment of rheumatoid arthritis and juvenile idiopathic arthritis. Significant reductions in DSAs and stabilization of renal function were seen at 2 years. Confirmation of this uncontrolled report, of course is necessary.
  • Clayton PA, Coates P. Are Sensitized Patients Better off with a Desensitization transplant or waiting on dialysis? Kidney International. 91. 2017

    Although this article refers to 2 manuscripts (N Eng J Med: 374: 940-959. 2016 and Lancet; 389:727-734. 2017) which report conflicting results regarding the survival benefit of transplantation in sensitized adult kidney transplant patients, the questions addressed are not different for children. Wait for a well matched kidney or desensitize and attempt transplant??

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In addition to reduced membership fees, there are lots of other important reasons to become a member of IPTA!

  • Great opportunities to network and develop mentor/mentee relationships with other IPTA members. Networking opportunities include:
    • The IPTA online member directory
    • Symposium networking events
    • Committee participation
    • List-serve participation with questions specific to pediatric transplantation

  • Up-to-date pediatric educational opportunities from the top leaders in the field of pediatric transplantation:
    • Online subscription to the IPTA Journal: Pediatric Transplantation
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    • Case studies dealing with key ethical issues to spark awareness, education and discussion
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Become a leader in the field of pediatric transplantation by your active involvement in the International Pediatric Transplant Association!

September 2017


IPTA 2017 Congress

The 9th Congress of the International Pediatric Transplant Association (IPTA) took place in Barcelona, Spain, from May 27-30, 2017 and was a great success both in terms of its excellent attendance and its scientific quality. Topics being addressed were updates and new data from ongoing pediatric transplant clinical trials (CTOTC), long-term complications following transplantation, standards for surveillance and treatment of infections in transplantation, perspectives in immune tolerance, up-to-date data from important registries, new and emerging immunosuppressive agents, ethical dilemmas in pediatric transplantation, devices used to support transplantation, issues in noncompliance and transfer of care, just to name a few.

There were special sessions designed for allied health-care professionals (AHP), who have a strong international AHP community within IPTA. The IPTA Lifetime Achievement Award was bestowed post-humously to Dr. William Harmon, and the Pioneer in Transplantation Award to Dr. Benedict Cosimi. Attendees from around the globe had the opportunity to network and plan for future clinical and research collaboration.


Ethical Case Studies

IPTA is pleased to introduce Case Studies dealing with key ethical issues in our quarterly newsletters to spark awareness, education and discussion. These will be spearheaded by the IPTA Ethics committee.

Case Study 1

Introduction

An eight-year-old girl with end-stage kidney disease secondary to Finnish type congenital nephrotic syndrome initially managed with daily albumin infusions requiring peritoneal dialysis from nine months of age followed by bilateral retroperitoneal nephrectomies at ten months of age. In her first two years of life, she had numerous treatment-related problems including multiple episodes of sepsis, requiring changes of central venous catheters; a chronically leaking gastrostomy (which eventually was removed) and severe gastro-oesophageal reflux disease, hypothyroidism, renal osteodystrophy and hypertension secondary to fluid overload. Following several episodes of severe peritonitis, including MRSA peritonitis, her peritoneal dialysis catheter was removed and subsequently an abdominal collection was drained. Haemodialysis was then commenced, but venous access proved to be difficult and became increasingly so over the forthcoming months.

A venogram revealed many occluded and stenosed veins; the thromboses in the superior vena cava and subclavian veins were identified as compromising catheter patency. At 19 months, she was admitted urgently to hospital with physical signs of acute sepsis (fever, tachycardia) associated with marked abdominal distension and tenderness. She failed to respond to standard antibiotic therapy and was found to have vegetation on the tricuspid valve within the right ventricle, suggestive of infective endocarditis, but without evidence of pulmonary emboli. She was treated with six weeks of intravenous antibiotics, and a permanent haemodialysis catheter was inserted. At this stage, our patient had suffered episodes of severe MRSA peritonitis associated with staphylococcal bacterial endocarditis, necessitating the removal of her peritoneal catheter; peritoneal dialysis was no longer an option. Haemodialysis was also problematic because of extreme difficulty in vascular access; it also became apparent that a vascular graft for haemodialysis would not be successful.

Unfortunately, there were no transplant options as she had been on call for over a year for a deceased donor and there was no living donor as her mother could not donate for medical reasons and her father, although a suitable match, stated he was unable to donate.

  • What medical care options exist for this patient?
  • What are the ethical considerations?
Case Study

The lack of effective dialysis or transplant options made both practical management and prognostication difficult and raised significant ethical dilemmas for the professionals concerned with her care. Following extensive meetings involving the intensive care team, the multidisciplinary team, close family members and the clinical ethics service, agreement was reached that an ethically appropriate action was that she should receive symptom care management at home and that no further active life-sustaining treatment should be offered.

Although she was discharged on these terms, the ethical debate did not cease. It transpired that the father had told his wife and family that the healthcare team had said he was an unsuitable donor. Although this was certainly not the case, the healthcare team felt unable to tell the family, because to do so would have been to breach the duty of confidentiality owed to father. Matters became further complicated when the parents requested resumption of full active management and other members of the wider family became involved. The latter requested copies of the patient’s notes, including all the pre-transplant work up and asked the specific question, “Why won’t you let her father donate?”

Contrary to expectations the child’s overall condition improved at home while receiving no fluids or therapies, so that she became more like the happy and playful child she had previously been. Her father reported that this change was more than he could bear and that in consequence he now wished to donate his kidney and moreover he did so freely. This was an unusual turn of events, but the team felt on reflection on the ethical issues, that they had little option but to respect the father’s wishes. The patient was accordingly recommenced on haemodialysis and the father underwent a full work up, including a psychiatric assessment, prior to kidney donation three weeks later.

Ethics Commentary

In deciding what treatment might be offered to this child it was crucial to ascertain what her best interests were and how, and by whom, they should be determined. The child had already had extensive medical treatments, requiring considerable time in hospital, and realistic therapeutic options were very limited. From a clinical perspective, there was clear consensus that renal transplantation was in the child’s best interests, in that it provided her with the best opportunity for an open future and would be likely to enhance quantity and quality of her life. Analysing the girl’s wishes and preferences was not possible to the extent required for her to determine her own future but the parents were clear that they wanted their child to survive and wanted her to receive the necessary treatment to prolong her life. Considering contextual factors (such as family’s social circumstances beliefs and values, they did not alter the apparently agreed view that renal transplantation was in her best interests.

However, the likelihood of a deceased donor organ becoming imminently available was considered unlikely and this led to an urgent scheme being introduced for potential paediatric renal transplant recipient. The clinical team worried about the burden of continuing dialysis in a girl in whom the medium or long-term options for this were effectively closed by poor access. Although the father was a match for live organ donation, he had stated that he did not wish to donate a kidney despite understanding, in the abstract at least, the consequences for his daughter if he did not. The treating team were ethically troubled by this as they felt that their primary duty was to the child, their patient. Nevertheless, they also recognised that they had an ethical and legal duty to respect the father’s apparently autonomous choice, even though they felt that his decision was not in the best interests of his child. A decision to force him to donate, even though it would have prevented harm to his daughter, could have been regarded as a disproportionate response with respect to his right to exercise a free choice. Given this analysis, and the certainty of death from end-stage kidney disease without transplantation or effective dialysis it seemed that the child’s best interests could only be served by the provision of high quality symptom care management to support her and her family and to ensure that her death was as peaceful as possible. In that sense, the decision to discharge was an ethically justifiable one.

However, ethical dilemmas for the treating team did not stop at that point. The child’s condition improved when she got home so that a request to resume active treatment was made. The team felt that such a request was only ethically sustainable if it were to lead to transplantation with her father as the live donor. The team were also aware that her father had told the immediate family that it was the clinical team who had decided he was an unsuitable donor. When confronted by the extended family’s request for information and a specific question as to why they had rejected the father as a donor, the team had the option of telling the truth to the family, or fulfilling their duty of confidentiality to the father. An analysis of the likely consequences of either course of action led them to the conclusion that the best interests of the child were more likely to be served by non-disclosure.

In the event, after long discussions with the father himself who saw that his child was dying, he changed his mind and offered himself as a donor. However, given the family circumstances and the involvement of the extended family the team could not be sure that his choice was freely made and that he had not been subject to such coercion as to make his consent to donate invalid. It could also have been the case that the father had come to believe that donation was the action that would define a virtuous father and one that would lead to an overall flourishing of the family unit, and thus be in accordance with principles of virtue ethics. Moreover, the outcome of her father’s donation was one that professionals and family alike considered to be in the child’s best interests and one that in practice was to eventually produce the desired outcome for her. In these circumstances, it seemed ethically appropriate, if not legally required, to have a psychiatric assessment. Overall the case illustrates the importance of process as well as outcome in the resolution of ethically challenging dilemmas and the complex interweaving roles of moral principles in the process.

Case Study 2

A 3 year old girl was diagnosed with nephrotic syndrome secondary to FSGS. She was initially treated with steroids and Cytoxan later converted to cyclosporine A. Despite treatment she slowly deteriorated into ESRD and started dialysis. At 10 years of age, she underwent a deceased donor kidney transplantation and was managed with triple immunosuppressive protocol (CyA, MMF and steroids) without pre-transplant plasmapheresis (PP).

At the 14th post op day with creatinine levels dropping to 1.0mg/dL she developed proteinuria of 17g//24hr. and was placed on PP sessions 3 times/ week followed by Rituximab (single dose of 375mg/m2). The following months despite aggressive continuous sessions of PP maintaining her protein urine level <10g/day she developed hypoalbuminemia (albumin levels 2.2g/dl) associated with severe leg edema, skin infection and convulsive disorder secondary to PRESS. At six months after transplant her mother requested to discontinue immunosuppressive treatment and she returned to dialysis.

Six years later she was fed up with dialysis and asked to be listed for a second transplant.

  • At this stage would you consider a second transplant using one of the parents who was a match donor knowing that this scenario might be associated with a high risk of recurrence?

We thought that we shouldn't offer live donation and listed her for a deceased donor transplantation. She had a PRA of 60% and waited almost 9 years until she received her second transplant. Rituximab was given as part of the induction protocol and PP was initiated at the second post-op day as a preventive measure. Despite these measures on post-op day 7 she developed again a high level proteinuria of 14g/24hr. She continued with PP sessions X3 for another two weeks followed by gradual reduction of the PP interval to once a week. Again, she presented with a full spectrum of complications secondary to severe proteinuria including anasarca, abdominal fluid collections requiring drainage to relieve abdominal tension and hypoalbuminemia.

  • Is there any benefit to continue PP and maintain the graft?
  • Should we give her a chance of a third transplant with our current inefficient treatment for recurrent FSGS?

Literary Highlights

With each newsletter, we plan to have an IPTA member highlight important recent publications in an area of general interest. Since all our members have access to our journal PEDIATRIC TRANSPLANTATION, this feature will highlight reports, from other journals, which may not be readily available to all our members. As with this inaugural edition, reports of adult data that may have relevance to our members may also be included. This newsletters’ literary highlights come from Sharon Bartosh, M.D., Chief, Pediatric Nephrology, American Family Children’s Hospital, University of Wisconsin.

  1. Allen PJ et al. . Recurrent glomerulonephritis after kidney transplantation: risk factors and allograft outcomes. Kidney International; 92: 461-469, 2017.

  2. Cosio FG and Cattran DC. Recent advances in our understanding of recurrent primary glomerulonephritis after kidney transplantation. Kidney International; 91: 304-314, 2017.

  3. Pippias M et al. Long-term kidney transplant outcomes in primary glomerulonephritis: Analysis from the ERA-EDTA Registry. Transplantation; 100: 1955-1962, 2016.

IPTA Committees 2017-2019

Much of the work of IPTA is can only be done through the contributions of our committees. We would like to introduce you to the IPTA committees for 2017-2019 and share their current initiatives.

Allied Health Professional (AHP) Committee

2017-2019 Initiatives

The AHP committee is in the process of carrying out a survey to describe the demographics and interests of transplant allied health professionals. The goal is to determine how the allied health committee can encourage and increase IPTA membership, as well as foster a greater involvement in allied health activities and committee work within the organization. The committee will revise and expand the Allied Health Professional page on the IPTA website to include a mission statement, a description of the AH community in transplant and their specific roles in caring for pediatric transplant patients, committee initiatives, membership benefits, quotes from members and how to become a member. The committee also plans to explore a link for networking and the ability to post questions to other AH members. The committee plans to develop an article for publication in Pediatric Transplantation on a contemporary topic that is relevant to the AHP community in addition to participating in review of the UNOS parent manual.

Education Committee

2017-2019 Initiatives

The Education committee has already participated in the IPTA review of the UNOS parent material and is in the process of a survey related to the Postgraduate Course of the IPTA 9th Congress in order to inform further course development. The Education committee will be developing the curriculum for the IPTA Fellows meeting in November 2018 and the renamed postgraduate course “Foundations in Transplantation” for the IPTA 10th Congress in Vancouver in 2019. Other exciting initiatives will be forthcoming this Fall.

Ethics Committee

2017-2019 Initiatives

The Ethics committee is the newest IPTA committee that has been formed to address the increasing ethical awareness in pediatric solid organ transplantation. As they develop their initiatives as a new committee, the group plans to raise awareness and educate by contributing cases to the IPTA newsletter (see this issue of the newsletter for their first contribution). In addition, to build upon a recent TTS initiative, they will be editing the recent TTS Ethics Survey for pediatrics with a goal to circulate it in early 2018 and to use the information gathered as a foundation for further initiatives moving forward.

Infectious Disease Committee

2017-2019 Initiatives

The ID committee has a number of active initiatives involving assessing current practice and developing consensus recommendations for publication in Pediatric Transplantation including 1) evaluation and approach to the presence of active infection in the potential pediatric transplant recipient, 2) status of the use of live vaccines after pediatric solid organ transplantation, and 3) pneumocystis prophylaxis strategies, in addition to a yearly Influenza Update. The ID Committee is proposing to develop a commentary to the TTS CMV Guidelines (currently in progress) specific to the pediatric perspective. This would highlight changes to both the overall document as well as to the pediatric section and its recommendations. In addition, the Committee hopes that the proposed commentary could identify ongoing pediatric specific gaps in the data with a goal of hoping to target future. Looking ahead, the ID committee is exploring the development of PTLD practice recommendations potentially including diagnosis, management and prevention. These are just some of the exciting initiatives coming out of the ID committee.

Membership Committee

2017-2019 Initiatives

The Membership Committee will be exploring a new dues structure for IPTA which is long overdue. This will take into consideration many different factors including our diverse membership of an international nature, the need to foster collaboration at all levels of pediatric transplantation, the need to develop junior people to pursue pediatric transplantation, and administrative considerations including the transition to TTS as a section and the move to an online journal. The Membership committee with also be looking at how to enhance the value of IPTA membership, focusing on member renewal and retention, and recruitment of new members – especially junior members and allied health professionals.

Outreach Committee

2017-2019 Initiatives

The Outreach committee is in the process of revising its mission, purpose and the application guidelines, processes and procedures - all of which will be made available to the IPTA membership when completed and approved by the IPTA Council. The committee has recently reviewed the status of the past projects and will provide a summary for the IPTA newsletter this year in addition to putting information on the IPTA website. The recent projects in Sri Lanka and Cape Town are in the process of being reviewed. In 2018, the committee will spearhead a call for a new round of applications following consolidation of all of the abovementioned initiatives. Stay tuned for more information!

Publications and Communications Committee

2017-2019 Initiatives

The Publications committee is going to assume a central role in increasing the publications from IPTA members in Pediatric Transplantation using a number of different strategies. Some of these include iincreasing the number of publications coming from committee members, increasing the number of authors involved in IPTA-sponsored writing projects, expanding the scope of writing projects to include white papers and practice recommendations, and working with other IPTA committees on joint projects. The Publications committee plans to work on a Peer Mentoring program to help authors with backgrounds in languages other than English, to improve the quality of the language of their submissions. Finally, the Publications committee will take a leadership role in the quarterly IPTA newsletter, working with the other committees to provide content that is interesting and relevant to the IPTA membership.

December 2016

Seasons Greeting from IPTA President

Dear IPTA members, colleagues and friends,

The IPTA Executive, Council and Committees are pleased to provide you with the third Newsletter this year for an update of our Association's activities. We will give you an overview on the projects and initiatives of the Allied Health Committee, Publication Committee, Membership Committee and Awards Committee with information on the newly introduced IPTA-TTS Congress Scientific Awards for trainees, allied health professionals and members from emerging countries. Most importantly, the IPTA 2017 Congress Chair Anne Dipchand will give an update on the upcoming 9th Congress of our Association in Barcelona, Spain, from May 27-30, 2017. The Scientific Committee has developed an exciting program that meets the needs of participants from across the world.

I look forward to seeing many of you at the upcoming IPTA Congress. Until then, feel free to reach out to me at any time with IPTA-related questions or comments. I always appreciate hearing from you.

Lastly, I would like to thank everyone for your engagement and support of the IPTA, wish everyone a relaxing and peaceful holiday season!

Yours sincerely,

Burkhard Tönshoff
IPTA President


Membership Committee Update

The Membership Committee has been active in working to recruit new members to the Association. In particular, to take advantage of the Barcelona meeting to broaden the membership in Europe and Asia. Steps have been taken to clarify the membership form and improve the capacity to pay for membership on-line.

The benefits of membership regarding the journal and awards and meetings has given us increased opportunities for recruitment.

We are hoping in the next six months leading up to the Barcelona meeting to address initiatives to increase the membership of junior trainees, researchers and young faculty and broaden membership amongst allied health and nursing.

We are happy to receive any ideas for the Membership Committee and any interested members who would like to join the Committee.

Stephen Alexander
Membership Committee Chair

IPTA Publications Committee Update

The IPTA Publications and Communications Committee is responsible for developing various publications relevant to IPTA members for publication in Pediatric Transplantation, the official journal of the IPTA. The Committee met recently to discuss future publications but would welcome feedback from members on topics they feel would be important for consideration, comments can be sent to info@iptaonline.org.

We are also pleased to welcome our new Committee members: Richard Kirk, cardiologist from Texas, Erika Pace, liver transplant specialist, Mariastella Serrano, liver transplant specialist, Manuel Rodriguez-Davalos, Director of the pediatric transplant unit in New Haven, Kenneth Brayman, transplant surgeon, Charlottesville, and Ryan Fischer, liver transplant specialist, Kansas City.

Guido Filler
Publications Committee Chair

Allied Health Committee Update

The Allied Health Committee is excited to announce our new members. First, joining us a Co-Chairs elect are Louise Bannister from Toronto, ON, CA and Beverly Kosmach-Park from Pittsburgh, PA, USA. They will take over as co-chairs at the Congress in May, and we are excited for their enthusiasm to lead this Committee moving forward. Other new Committee members include Christine Divens (Clinical Nurse Specialist, Pittsburgh, PA, USA), Barbara Roessner (Physician Assistant, Omaha, NE, USA), Luca Dello Strologo, (Nephrologist, Rome, Italy), Laura O’Melia (Nurse Practitioner, Boston, MA, USA) and Karyn Sanson (Nurse Specialist, Auckland, NZ). This group joins our continuing members Debra Lefkowitz (Psychologist, Philadelphia, PA, USA; outgoing Chair and current IPTA Councilor), Dawn Freiberger (Nurse Coordinator, Boston, MA, USA), Jo Wray (Psychologist, London, UK), Diana Shellmer (Psychologist, Pittsburgh, PA, USA).

The AHP Committee is currently examining some new initiatives. Our first project is to survey our membership to gain a better understanding of group interests, project ideas, and preferred communication methods. We’ve seen tremendous enthusiasm from our Allied Health colleagues at prior Congresses, and want to figure out how to better harness this energy and foster international connections between this very diverse group of people. Other proposed projects include additional monographs for Pediatric Transplantation as well as position papers and best practice guidelines.

Debra Lefkowitz
AHP Interim Committee Chair

September 2016

IPTA PRESIDENT’S MESSAGE

Dear IPTA members, colleagues and friends,

The Executive Committee, the Council and the IPTA committees are pleased to provide you with the second Newsletter this year for an update of our Association's activities. We will give you a comprehensive update on the projects and initiatives of the Education Committee, Infectious Disease Committee, Publication Committee, and the newly founded Ethics Committee. We are delighted that 24 IPTA members recently volunteered for collaboration in these committees! It is a good way to involve the membership and to increase the interaction with the transplant community.

The upcoming 26th International Congress of the Transplantation Society (TTS) will be held in Hong Kong from August 18-23, 2016. There will be various IPTA activities during the congress such as an IPTA/TTS Pediatric Post Graduate Course on August 19, 2016 focusing on two major topics: “Listing children for solid organ transplantation and donor selection” and “Specific aspects of post-transplant care in children” and two scientific sessions organized by IPTA. Hopefully you will have the chance to join this important congress with our mother society TTS. Please stop by for a chat; all of your suggestions are welcome. Have a great summer!

Yours sincerely,

Burkhard Tönshoff
IPTA President


IPTA 2017: A CONGRESS OF COLLABORATIONS!

Anne I. Dipchand, Congress Chair

EIGHT MONTHS TO GO … and it will go by so quickly! Program planning is well underway and we are thrilled with the response and enthusiasm of our invited speakers! Look for a preliminary program to be online later in 2016.

Collaboration is an important part of the IPTA 2017 Congress. On the springboard of our partnership with TTS, we have actively pursued opportunities to partner with other transplant organizations. It is important that we all work together as a community to advance the science and practice of transplant medicine, especially the pediatric component through IPTA. The Barcelona Congress will showcase collaborative sessions between IPTA and the following organizations:

We are very excited about the opportunity to work together with these international transplant societies and believe that this will be the beginning of future partnerships allowing us to advance pediatric offerings moving forward. We continue to work with other organizations and hope to add to this list over the next few months.

Every society is as strong as its members, and the same can be said for IPTA. You will soon receive requests for nominations for the IPTA biennial awards. We look forward to your nominations of your colleagues around the world so that we can honor them for their dedication to pediatric transplantation. This year we will also announce the first IPTA Pioneer in Transplantation lecture and award to a well deserving pioneer in our field.

As you plan your trip to IPTA 2017, here is a recap of other things to look forward to: a vibrant Opening Ceremony on Saturday May 26th; scientific sessions that will include world renowned plenary and state-of-the art speakers; and the very popular parallel interactive workshop sessions with experts in the field. Experience the history of medicine in Spain at the Hospital San Pau during the congress social evening on Monday May 28th.


PEDIATRIC ORGAN TRANSPLANTATION SUMMER SCHOOL
ZAVIDOVO, RUSSIA

The IPTA Executive Committee and two former presidents of IPTA, Drs. Richard Fine and Richard Trompeter, had the opportunity to participate in the recent Pediatric Organ Transplantation Summer School, organized by Drs. Michael Kaabak and Nadeen Babenko of the Petrovsky Research Center of Surgery in Moscow. Two days of in depth discussions covering all aspects of pediatric kidney, heart and liver transplantation were presented to an audience of some 150 pediatric transplant specialists, mostly nephrologists and surgeons from all over Russia. The venue was near Tver, an hour north of Moscow. The talks were well received, with questions and discussion from the audience and among the speakers.

he pediatric kidney transplant program in Russia is the largest pediatric kidney transplant program in Russia, and performs some 30 transplants in children annually; it is the only program in Russia transplanting kidneys into small children under 5 years of age.

Ron Shapiro, Anne Dipchand, Mignon McCulloch and Burkhard Tönshoff


EDUCATION COMMITTEE UPDATE

Chair: Christian Benden, Switzerland
Incoming Chair: Rohit Kohli, OH, USA

The Education Committee, an international group of pediatric transplant physicians/surgeons and allied health professionals, is responsible for expanding IPTA's educational activities. In 2016, the Education Committee has continued to expand the Society’s educational activities co-organizing the biennial IPTA Fellows Symposium on Pediatric Transplantation that took place at Mount Sinai in New York City in April this year with 30 fellows from around the world and an international faculty of experts in the field of pediatric transplantation. The IPTA Fellows Symposium provided updates in a broad spectrum of pediatric transplantation, but furthermore, an ideal environment for networking and mentoring. Once again the IPTA Fellows Symposium proved to be very popular amongst trainees, one of them stating that “… the whole meeting was phenomenal and it really helps give "newbies" like us perspective and help in trying to make our mark in the field…”

The Education Committee successfully submitted symposium proposals for the American Transplant Congress in May in Boston, MA, USA, and contributed to the educational content of a Joint IPTA/TTS Pediatric Post Graduate Course at the 26th International Congress of The Transplantation Society in August 2016 in Hong Kong. The Pediatric PG Course reviews listing criteria for children undergoing solid organ transplantation and donor selection, and provides insights on specific aspects of post-transplant care in children.

In the meantime, the Education Committee has already started to organize the educational content of the PG Course planned at the start of the upcoming 9th IPTA Congress to be held in Barcelona, Spain, in May 2017.


ID CARE COMMITTEE UPDATE

Upton Allen, ID CARE Committee Chair

The ID-CARE initiative was formed within IPTA with the idea that one of its main goals would be to serve as the focal point for ID initiatives and to link IPTA with other ID groups where appropriate. The focus is ID Clinical Care, Advocacy, Research and Education. The Committee seeks to engage IPTA members from all disciplines within pediatric organ stem cell transplantation.

The ID CARE Committee has been involved in several initiatives, some of which have been published in Pediatric Transplantation (Curriculum-related documents). In keeping with this approach, the group is currently working on a document that focuses on the evaluation and management of transplant candidates or recipients with recent active infections. A first draft of this document has been completed and submission to Pediatric Transplantation is expected in Fall 2016. The leads are Arnaud L’Huillier, Upton Allen and Michael Green.

The group has also identified other projects which are at varying stages of completion. Among these are the following:

  1. Status of use of live vaccines after pediatric solid organ. Klara Pofsay-Barbe is leading this initiative. In addition, a survey of current practices has been proposed.
  2. Pneumocystis prophylaxis strategies across transplant centers. This is being led by Mignon McCulloch and Marian Michaels.
  3. TB and Transplantation: A Pediatric Perspective. This initiative is led by Mignon McCulloch.
  4. Yearly Influenza update. This has been proposed as the first in the series of yearly influenza updates be led by Natasha Halasa. This will focus on what is new in influenza molecular epidemiology, antiviral drug resistance, vaccines, treatment and chemoprophylaxis with a focus on immunocompromised patients, notably transplant patients.

Over the upcoming months, the group looks forward to engaging representation from the HSCT group. Collaborations on selected documents or guidelines will also occur. These included, but are not limited to cytomegalovirus (CMV) or Post-transplant lymphoproliferative disorder (PTLD).


PEDIATRIC TRANSPLANTATION UPDATE

Wiley, publisher of Pediatric Transplantation has announced the acquisition of Atypon, one of the world’s leading scientific and scholarly information platform providers.

Wiley is very excited about joining up with our new colleagues at Atypon to bring you the best publishing technology in the industry. Atypon shares our values and focus on the researcher, and working with them is a natural extension of our commitment to providing flexibility to our partners and increasing digital engagement for readers.

Over the next 18 months, we’ll migrate from the platform supporting the Wiley Online Library to Atypon’s Literatum platform. This will bring a number of new benefits to users, including seamless access to content through authenticated article links, improved single-sign-on, editor highlights, article usage metrics, site-wide fully responsive mobile design, minimal-downtime releases, targeted content marketing, article recommendations and e-mail alerting, and more powerful search. This approach will allow us to more rapidly and flexibly respond to the changing needs of the communities we serve.

Wiley will join a diverse array of organizations currently using Atypon’s platform, including societies like the American Chemical Society, Massachusetts Medical Society (publishers of The New England Journal of Medicine), and the American Society of Civil Engineers; publishers such as Elsevier, Sage, and Taylor & Francis, and university presses.

This acquisition is part of our commitment at Wiley to supporting the advancement of scientific and scholarly research and helping authors to reach the widest audience possible and to create impact for their research, investing in the industry’s best technology experience and curating and protecting the version of record.

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