Igniting Change
The need for solid organ transplants continues to grow. More and more Americans are dying every year on waiting lists. Although the number of deceased donor transplants has grown, living donor transplants have changed little since 2004. Additionally, long-term outcomes for donors are unclear, and this remains a major barrier to living donation.
Who We Are
The Chronic Disease Research Group, a division of the Hennepin Healthcare Research Institute, operates the Scientific Registry of Transplant Recipients (SRTR), which manages the Living Donor Collective (LDC).
SRTR, under contract with the Health Resources and Services Administration of the US Department of Health and Human Services, established a living donor registry that studies the long-term outcomes of living organ donation.
Mission
The mission of LDC is to expand its national living organ donor registry in which transplant programs register all living donor candidates who come to be evaluated at their center, in order to assess long-term outcomes of living donor candidates and donors.
Vision
LDC aims to provide living donor and candidate data analysis efforts that are accurate, clear, and timely for use by transplant programs, organ procurement organizations, living donors and transplant families, so the effects of living organ donation become widespread knowledge.
Program History
The LDC started as a pilot project, launching in 2018 as a small registry of 16 transplant programs (10 kidney and 6 liver). The project allowed SRTR to explore the logistics of candidate registration, analyze how best to determine reasons for not donating, and design procedures for data collection and survey follow-up.
Registered Donors
Participating transplant centers evaluated all potential living organ donors and submitted the data to SRTR.
Candidates were registered in order to track the long-term effects and outcome differences between both groups.
Data Collection
SRTR followed up on aspects of physical and psychosocial well-being plus additional outcomes by linking participants to registries and conducting periodic surveys.
The results of the pilot study have been published in scientific journals and are available on the LDC publications page.
Expansion Phase
With the pilot project completed in 2020, additional centers will be added over the subsequent years to ultimately include all donors and donor candidates in the US.
In time, we will be able to better inform potential donors about the long-term benefits and risks of living donation.