2013 - ISBTS 2013 Symposium

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Posters and Exhibition

15.65 - First results of the Dutch online Registry of Intestinal Failure and Intestinal Transplantation (DRIFT)

Presenter: Esther , Neelis, , Netherlands
Authors: Esther G. Neelis1,2,3,4,5,6,7, Gerard Dijkstra1,2,3,4,5,6,7, Anne Margot Roskott1,2,3,4,5,6,7, Floris Imhann1,2,3,4,5,6,7, Vincent B. Nieuwenhuijs1,2,3,4,5,6,7, Mireille J.M. Serlie1,2,3,4,5,6,7, Merit M. Tabbers1,2,3,4,5,6,7, Geert J. Wanten1,2,3,4,5,6,7, Edmond H.H.M. Rings1,2,3,4,5,6,7

First results of the Dutch online Registry of Intestinal Failure and Intestinal Transplantation (DRIFT)

Esther G. Neelis1,2,3,4,5,6,7, Gerard Dijkstra1,2,3,4,5,6,7, Anne Margot Roskott1,2,3,4,5,6,7, Floris Imhann1,2,3,4,5,6,7, Vincent B. Nieuwenhuijs1,2,3,4,5,6,7, Mireille J.M. Serlie1,2,3,4,5,6,7, Merit M. Tabbers1,2,3,4,5,6,7, Geert J. Wanten1,2,3,4,5,6,7, Edmond H.H.M. Rings1,2,3,4,5,6,7

1Pediatrics, UMCG, Groningen, Netherlands; 2Pediatrics, AMC, Amsterdam, Netherlands; 3Gastroenterology, UMCG, Groningen, Netherlands; 4Aceso B.V., Groningen, Netherlands; 5Internal Medicine, AMC, Amsterdam, Netherlands; 6Surgery, Isala Clinics, Zwolle, Netherlands; 7Gastroenterology, UMC St. Radboud, Nijmegen, Netherlands

 

Background
Total parenteral nutrition at home (HPN) allows patients with irreversible or chronic intestinal failure (CIF) to survive. It is, however, associated with frequent complications and significant morbidity and mortality. Intestinal transplantation (ITx) is an alternative treatment for patients with CIF and failure of HPN. The Dutch online Registry of Intestinal Failure and Intestinal Transplantation (DRIFT) was developed by the Dutch working group for Intestinal Failure (represented by the Dutch HPN Centres for children and adults and the Intestinal Transplantation Centre).
Aim
To obtain a baseline registration of all patients with CIF in the Netherlands, which can be used to optimize care and determine the potential candidates for ITx at a national level.
Methods
DRIFT is an English language, web-based database. Demographic and clinical data of all Dutch patients with CIF and patients after transplantation are registered on January 1, 2013.
Results
HPN is provided by two tertiary centres. In total, 264 patients with CIF are being treated in the Netherlands. The Academic Medical Centre Amsterdam treats 69 adults and 22 children with CIF. The University Medical Centre Nijmegen treats 165 adults and 8 children with CIF. 12 patients (5 children and 7 adults) with CIF underwent an ITx in the Netherlands till January 1, 2013 (from 2001 on). 7 patients received an isolated small bowel transplant, 3 patients a small bowel and kidney transplant, 2 patients a small bowel, colon, pancreas and liver transplant. Indications were short bowel syndrome (n=7, 58.3%), primary mucosal disorder (n=3, 25%) or motility disorder (n=2, 16.7%). With a follow up ranging from 4 months to 9.5 years, 9 patients (75%) are alive.
Conclusion
An accurate registration of CIF and ITx in the Netherlands is available. ITx was only performed in 12 patients in a period of 12 years. 

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