Session Time: 6:00pm-7:00pm
Presentation Time: 6:30pm-6:35pm
*Purpose: The National Donate Life Living Donor Registry launching in 2021 will allow 4000 persons a day the opportunity to become a living donor offering education and screening on demand, create a ‘call to action’ to add to national media stories and events, and provide infrastructure for ‘living donor drives’ that will not overburden staff at transplant centers.
*Methods: A workgroup of donation and transplantation experts was convened to drive the creation of the registry. This group developed research and created education, questions and criteria for screening. The National Donate Life Living Donor Registry will be embedded in the National Donate Life Registry (registerme.org.) Prospects will be given information, complete screening questions and when answers meet predetermined thresholds will be mailed a no cost “test kit” for saliva to screen for blood type and HLA typing. The test results and health information will be linked and uploaded to a secure database completing the potential donor’s registration which will be available to the transplant center selected by the prospective donor from a list driven by their geographical preferences.
*Results: A nationwide survey of 500 qualifying adults: (Age 21-60, not opposed to organ and tissue donation) included 50% non-Hispanic Caucasian, 25-30% African American, 25-20% Hispanic or Asian and a nationwide sample of 50 previous living donors was conducted on the usability of web pages and to gain insights on design improvements. The results showed the web pages performed well in communicating the intended information and minor suggestions for improvement were received. Testing was completed on 40 saliva samples comparing the results of ABO and HLA saliva testing to serum testing from the same participants at two different labs to assess the use of saliva testing for initial screening. 100% of comparisons have come back as matches. Testing with simulated personal health information uploaded into the registry porta validated authentication procedures, data sharing techniques and ease of use accessing the registry portal, etc.
*Conclusions: Each year 1.5 million Americans register as donors via the National Donate Life Registry, registerme.org. If 1 percent expressing additional interest in living donation are ultimately evaluated and cleared, an additional 15,000 living donors per year could occur. Even if only half of those donate 7,500 more lives would be saved. If these donors started a paired donation (KPD) chain (average = 3 transplants) up to 22,500 more lives could be saved. There were 6,867 living-kidney donor transplants in 2019. Use of the preexisting geographically agnostic organ donation registry to be the home of the living donor registry will generate even greater successes than evident in the Israeli model where a community organization has driven growth in altruistic living unrelated donor transplantation.
To cite this abstract in AMA style:Milton JE, Cooper M, Hippen B. Launching a National Living Donor Registry [abstract]. Am J Transplant. 2021; 21 (suppl 3). https://atcmeetingabstracts.com/abstract/launching-a-national-living-donor-registry/. Accessed September 21, 2021.
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