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.
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.
Currently, the Registry collects the following information:
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 www.intestinaltransplant.org
It is highly advisable that the update be done electronically, through the Microsoft Access file sent to each centre. If this is not possible, we have set up an online form on this site that allows paper based centres to update without the need to physically mail the forms or fax them.
Please fill out the online form for each patient, AND attach the corresponding PDF* form for each patient for verification purposes.
In case of any doubts or inquiries regarding ITR patient forms please contact:
Max Marquez, MD
Data Use Policy
The Intestinal Transplant Association (herein “recipient”) collects and utilizes a limited patient data set from its participating centres (herein “sender”) as described in the Statement of Agreement.
IRTA undertakes reasonable efforts to ensure that all personally identifiable information collected on our site remains secure. The database is within a Secure Server in a Private Network, under strict electronic security measures including: (a) mirrored drives; (b) daily backups; (c) firewall; (d) record level data made anonymous; (e) entire database encryption; (f) password protected server, directory and database file; (g) limited aggregated data set used for analysis in standalone computer. Physical security measures include, but are not limited to: (a) restricted access area with individually logged key entry; (b) locked file cabinets for physical records (if any).