The Living Donor Collective: A Scientific Registry for Living Donors |
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| Authors: | B. L. Kasiske S. K. Asrani M. A. Dew M. L. Henderson C. Henrich A. Humar A. K. Israni K. L. Lentine A. J. Matas K. A. Newell D. LaPointe Rudow A. B. Massie J. J. Snyder S. J. Taler J. F. Trotter A. D. Waterman the Living Donor Collective participants |
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| Affiliation: | 1. Scientific Registry of Transplant Recipients, Minneapolis Medical Research Foundation, Minneapolis, MN;2. Department of Medicine, Hennepin County Medical Center, Minneapolis, MN;3. Transplant Hepatology, Baylor University Medical Center, Dallas, TX;4. Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, PA;5. Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD;6. Department of Surgery, University of Pittsburgh School of Medicine, Pittsburgh, PA;7. Department of Medicine, Saint Louis University, St. Louis, MO;8. Department of Surgery, University of Minnesota, Minneapolis, MN;9. Department of Surgery, Emory University School of Medicine, Atlanta, GA;10. Recanati Miller Transplantation Institute, Mount Sinai Hospital, New York, NY;11. Division of Nephrology and Hypertension, Mayo Clinic, Rochester, MN;12. David Geffen School of Medicine at UCLA, Kidney Transplant Program, Los Angeles, CA |
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| 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. |
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| Keywords: | editorial/personal viewpoint organ transplantation in general donors and donation donors and donation: donor follow‐up donors and donation: living Scientific Registry for Transplant Recipients (SRTR) |
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