Intestinal Registry’s Scope
Mission. The mission of the ITR is to provide data on the outcomes of intestine transplantation to the international intestine transplant community in order to support their efforts and improve outcomes as well as inform policy development.
Background. The Intestinal Transplant Registry (ITR) is currently managed by the Intestinal Transplant Association (ITA) under the direction of Matthew Everly. Analyses are directed by the Research Committee of the Association.
The Registry has collected data on the world-wide outcomes of intestine transplantation since 1985. Data are provided every two years by participating centres. It is compiled, verified, analyzed, and presented in aggregate form only at the Bi-Annual meeting of the ITA. Specific queries about outcomes are provided to participating centres upon request.
Data Collected. Currently, the Registry collects the following information:
- Donor information
- Recipient demographics, such as gender and age.
- Pre-transplant diagnosis leading to transplant.
- Pre-transplant status (the patient’s condition before transplant).
- Type of transplant (bowel; bowel & liver; or “cluster transplant”).
- Post-transplant status and complications.
- Anti-rejection drugs taken by patients.
- Descriptive reports of donor and recipient profiles; and transplant outcomes.
- Inferential Analyses to determine factors affecting outcomes by means of:
- Univariate analyses (data checking and validation)
- aggregate bivariate analysis
- trend analysis
- predictive multinomial model building
Privacy and Confidentiality. Data are presented in aggregate form only, and international privacy and data security have been met ensure patient data and centre confidentiality.
To visit the Intestinal Transplant Registry website, please visit http://www.terasaki.org/itr