MINNEAPOLIS ― DECEMBER 9, 2016 ― The Scientific Registry of Transplant Recipients (SRTR), under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services, is pleased to announce that they will launch a pilot project with 14 transplant programs that will establish a registry of living donors, to follow long-term health outcomes after living donation.
SRTR’s plan is to establish a living donor registry in which participating transplant programs register all potential living donor candidates evaluated at their center. Data on all potential living organ donors will be submitted to SRTR at the beginning of their evaluation by the assessing transplant center, and aspects of their physical and psychosocial well-being will be followed up by SRTR. SRTR will provide support for coordination time to conduct this pilot study at each program, acknowledging that during this exploratory start-up study additional time and effort will be required to conduct the project.
This pilot project will allow SRTR to explore the logistics of enrolling potential living donors and test the possibility of direct follow-up with the registered participants without relying on OPTN data collection. All registered participants will be contacted for periodic surveys, and smaller numbers of participants will be contacted for more detailed, targeted surveys. Additional long term health outcomes will also be ascertained through linkages to various electronic data sources, including pharmacy prescription fill claims to determine outcomes such as treatment of end-stage renal disease, and complications such as diabetes, depression, and hypertension. SRTR will assess the outcome difference between the two groups for the long term effects of donation.
The pilot phase of establishing the registry is anticipated to last two years. It is projected that the first donors will be enrolled in the third or fourth quarter of 2017. Once the pilot phase is completed by the end of 2018, the registry can then be incrementally expanded to eventually include most if not all potential living donors evaluated at transplant programs in the US.
For more information about this SRTR project, please contact us at [email protected].
About SRTR
SRTR is operated under the Minneapolis Medical Research Foundation by its Chronic Disease Research Group division. It’s responsible for providing statistical and other analytic support to the Organ Procurement and Transplantation Network (OPTN) for purposes including the formulation and evaluation of organ allocation and other OPTN policies. SRTR seeks to provide information that is accurate, clear, and timely for use by the public, the Department of Health and Human Services, OPTN, transplant programs, organ procurement organizations, transplant candidates, transplant recipients, living donors, and donor families.
Media Contact: Mona Shater
Marketing and Communications Specialist
Chronic Disease Research Group
Minneapolis Medical Research Foundation
612.873.6823
[email protected]
