Donating Life: Outcomes and Opportunities

SRTR's Living Donor Registry and Other Valuable Resources


Overview

The increased need for organ transplants has sparked encouragement of the general public to consider living donation. However, data on the long-term effects of living donation remains limited. These unknowns are obstacles for both transplant professionals and potential donors, who either struggle to meet transplant needs or to make an informed decision on donating.

The Living Donor Collective

The Scientific Registry of Transplant Recipients (SRTR) established a living donor registry, the Living Donor Collective (LDC), to collect, analyze, and understand living kidney and liver donor candidate and donor outcomes. LDC envisions a future in which transplant programs and the public can use this cumulative data to make well-rounded decisions about living donation. 

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.

The pilot project completed in 2020, and additional centers will be added over the coming years to ultimately include all donors and donor candidates in the United States.

Resources for Potential Living Donors

The listed resources provide an overview of living donation and living kidney and liver donation in particular.*

General Information

American Society of Transplantation (AST) - AST Living Donor Community of Practice (LDCOP) provides educational materials, including toolkits and webinars for potential living donors.

Donate Life America (DLA) - Nonprofit that handles the National Donate Life Registry, where anyone can register to be an organ donor. Currently, DLA is in the process of establishing the National Donate Life Living Donor Registrywhich facilitates non-directed living kidney donation.

The registry intends to improve the referral and evaluation process at living donor programs so more transplant candidates can receive a life- saving kidney. LDC handles long-term follow-up of living donor outcomes, while DLA focuses on connecting potential non-directed  donors to a living donor program.

Health Resources & Services Administration (HRSA) - Organ Donation - US government source on organ donation. 

The United Network of Organ Sharing (UNOS) - Transplant Living - Nonprofit organization with a variety of living donor information, from its history to FAQs. 

The United Network of Organ Sharing (UNOS) - Transplant - Living Donation - Nonprofit organization with a variety of living donor information, from data figures to more resources.

 

Kidney Organizations

Alliance for Paired Kidney Donation (APKD) - Organization that addresses the kidney paired donation process for recipients and donors. 

American Association of Kidney Patients (AAKP) - Organization that centers on the well-being and needs of kidney patients through education, community, and additional services.

American Kidney Fund (AKF) - Kidney nonprofit that provides materials on kidney disease and becoming a kidney donor. 

National Kidney Foundation (NKF) - Organization with The Big Ask, The Big Give project, which helps begin the conversation about living kidney donation. 

National Kidney Registry (NKR) - Registry that outlines the process of donating through NKR.

 

Liver Organizations

American Liver Foundation (ALF) - Founded by American Association for the Study of Liver Diseases (AASLD) - Organization that focuses on the treatment and prevention of liver disease and provides tools for potential living liver organ donors.

 

Financial Assistance 

American Society of Transplantation (AST) - Organization that offers a financial toolkit that addresses questions on the financial impact of living donation.

National Living Donor Assistance Center (NLDAC) - Program that offers financial assistance for non-medical costs associated with living donation. Additional financial resources are also available.

 

Mental Health 

National Institute of Mental Health (NIMH) - Federal agency that explains how to find a healthcare provider and lists federal resources and national agencies for those seeking mental health services.

 

Living Donor Collective (LDC) Resources

Digital LDC Brochure 

Printable LDC Brochure

Resources for Transplant Professionals

The resources below are for transplant programs evaluating living donors.*

American Society of Transplantation (AST) - Offers living donor educational resources through Communities of Practice. 

Kidney Disease: Improving Global Outcomes (KDIGO) - Nonprofit organization that provides clinical practice guidelines on living kidney donation and end-stage kidney disease risk-estimation tools.

Grams ME, Sang Y, Levey AS, Matsushita K, Ballew S, Chang AR, Chow EK, Kasiske BL, Kovesdy CP, Nadkarni GN, Shalev V, Segev DL, Coresh J, Lentine KL, Garg AX; Chronic Kidney Disease Prognosis Consortium. Kidney-Failure Risk Projection for the Living Kidney-Donor Candidate. N Engl J Med. 2016 Feb 4;374(5):411-21. doi: 10.1056/NEJMoa1510491. 

 

*The Health Resources & Services Administration (HRSA) has approved the sharing of these external resources on the Scientific Registry of Transplant Recipients website but is not responsible for, nor can it verify, the accuracy of each resource's information.