Concepts for a Collaborative Approach to Living Donor Data Collection

At a glance

Background

The OPTN Living Donor Committee has been discussing opportunities to collect data in order to analyze long-term outcomes of living donation and barriers to living donation. Due to the barriers associated with collecting extended living donor follow-up data from transplant programs and the consensus that longer-term data are needed, the Committee determined that some other entity, such as a registry, is better situated to connect directly with living donors.As such, the Committee has been collaborating with the Scientific Registry of Transplant Recipients (SRTR) to develop a potential future state of living donor data collection. The concept paper explores and discusses the possibilities of this future state and seeks community feedback.

Supporting media

Presentation

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Proposed concept

The paper details the concept of the OPTN requiring collection and reporting of living donor candidate and donation decision data. These data would be shared with the SRTR Living Donor Collective to establish a foundation in which the SRTR Living Donor Collective could directly follow-up with living donor candidates and living donors long-term at a national level.

Anticipated impact

What it's expected to do
- Details a potential future state of living donor data collection in which the OPTN and SRTR collaborate to achieve long-term living donor data collection
- Provides education on the SRTR’s Living Donor Collective
- Details concepts related to the OPTN requiring data collection on “living donor candidates” and donation decision
- Details a possible definition for “living donor candidate” and estimates data collection for this population
- Provides updates on the Living Donor Committee’s granular review of OPTN living donor data collection
- Seeks feedback from the community on the concepts outlined in the paper

What it won't do

This concept paper is intended to describe potential changes to living donor data collection and solicit feedback; it will not result in a policy or data collection changes at this time.

Terms to know

SRTR Living Donor Collective: A voluntary living donor registry in which participating transplant programs register living donors as well as individuals evaluated for living donation that do not proceed to donation (living donor candidates) to capture a control population. The SRTR Living Donor Collective collects data directly from living donor candidates and living donors and seeks to examine access and long-term outcomes attributable to living donation.
Living Donor: A living individual from whom at least one organ is recovered for transplantation.