The Living Donor Collective: A Scientific Registry for Living Donors

the Living Donor Collective participants

Research output: Contribution to journalArticlepeer-review

36 Scopus citations

Abstract

In the setting of an overall decline in living organ donation and new questions about long-term safety, a better understanding of outcomes after living donation has become imperative. Adequate information on outcomes important to donors may take many years to ascertain and may be evident only by comparing large numbers of donors with suitable controls. Previous studies have been unable to fully answer critical questions, primarily due to lack of appropriate controls, inadequate sample size, and/or follow-up duration that is too short to allow detection of important risks attributable to donation. The Organ Procurement and Transplantation Network does not follow donors long term and has no prospective control group with which to compare postdonation outcomes. There is a need to establish a national living donor registry and to prospectively follow donors over their lifetimes. In addition, there is a need to better understand the reasons many potential donors who volunteer to donate do not donate and whether the reasons are justified. Therefore, the US Health Resources and Services Administration asked the Scientific Registry of Transplant Recipients to establish a national registry to address these important questions. Here, we discuss the efforts, challenges, and opportunities inherent in establishing the Living Donor Collective.

Original languageEnglish (US)
Pages (from-to)3040-3048
Number of pages9
JournalAmerican Journal of Transplantation
Volume17
Issue number12
DOIs
StatePublished - Dec 2017

Bibliographical note

Funding Information:
This work was conducted under the support of the Minneapolis Medical Research Foundation, contractor for SRTR, as a deliverable under contract HHSH250201500009C (US Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation). As a US government– sponsored work, there are no restrictions on its use. The authors thank SRTR colleague Nan Booth, MSW, MPH, ELS, for manuscript editing.

Funding Information:
R. Bailey, Department of Surgery, University of Minnesota, Minneapolis, Minnesota; A. Barber, Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania; L. Berndt, Division of Nephrology, Department of Medicine, Hennepin County Medical Center, Minneapolis, Minnesota; G.M. Dano-vitch, David Geffen School of Medicine at UCLA, Kidney Transplant Program, Los Angeles, California; M. Dunbar-Forrest, David Geffen School of Medicine at UCLA, Kidney Transplant Program, Los Angeles, California; R. Follmer, SRTR, Minneapolis Medical Research Foundation, Minneapolis, Minnesota; B. Haydel, Recanati/Miller Transplantation Institute, Mount Sinai Hospital, New York, New York; H.F. Hunt, Living Donor, New England States Committee on Electricity, Longmeadow, Massachusetts; P.J. Kacani, Living Donor, Richmond, Virginia; S.A. Leander, Milwaukee School of Engineering, School of Nursing, Milwaukee, Wisconsin; AS Levey, Living Donor, Division of Nephrology, Tufts Medical Center, Boston, Massachusetts; M.A. Lewis, Living Donor, RTI International, Research Triangle Park, North Carolina; S.B. Mathews, Department of Surgery, Emory University School of Medicine, Atlanta, Georgia; D.M. Myer, Transplant Hepatology, Baylor University Medical Center, Dallas, Texas; D.J. Olenick, Living Donor, BLDG Management Company, New York, New York; J.D. Pei-pert, David Geffen School of Medicine at UCLA, Kidney

Publisher Copyright:
© 2017 The American Society of Transplantation and the American Society of Transplant Surgeons

Keywords

  • Scientific Registry for Transplant Recipients (SRTR)
  • donors and donation
  • donors and donation: donor follow-up
  • donors and donation: living
  • editorial/personal viewpoint
  • organ transplantation in general

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