The Living Donor Collective: A Scientific Registry for Living Donors

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, R. Bailey, A. Barber, L. Berndt, G. M. DanovitchM. Dunbar-Forrest, R. Follmer, B. Haydel, H. F. Hunt, P. J. Kacani, S. A. Leander, A. S. Levey, M. A. Lewis, S. B. Mathews, D. M. Myer, D. J. Olenick, J. D. Peipert, J. R. Rodrigue, K. Schwab, D. Segev, M. Shater, P. Shim, E. Steffens, S. Stencel, M. Stevens, S. Tenge, B. Thompson, J. H. Wang, the Living Donor Collective participants

*Corresponding author for this work

Research output: Contribution to journalArticle

17 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

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

ASJC Scopus subject areas

  • Immunology and Allergy
  • Transplantation
  • Pharmacology (medical)

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  • Cite this

    Kasiske, B. L., Asrani, S. K., Dew, M. A., Henderson, M. L., Henrich, C., Humar, A., Israni, A. K., Lentine, K. L., Matas, A. J., Newell, K. A., LaPointe Rudow, D., Massie, A. B., Snyder, J. J., Taler, S. J., Trotter, J. F., Waterman, A. D., Bailey, R., Barber, A., Berndt, L., ... the Living Donor Collective participants (2017). The Living Donor Collective: A Scientific Registry for Living Donors. American Journal of Transplantation, 17(12), 3040-3048. https://doi.org/10.1111/ajt.14365