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

11 Citations (Scopus)

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 1 2017

Fingerprint

Living Donors
Registries
Tissue Donors
Tissue and Organ Procurement
United States Health Resources and Services Administration
Organ Transplantation
Sample Size
Volunteers
Safety
Control Groups

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)

Cite this

Kasiske, B. L., Asrani, S. K., Dew, M. A., Henderson, M. L., Henrich, C., Humar, A., ... 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
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. ; Danovitch, G. M. ; Dunbar-Forrest, M. ; Follmer, R. ; Haydel, B. ; Hunt, H. F. ; Kacani, P. J. ; Leander, S. A. ; Levey, A. S. ; Lewis, M. A. ; Mathews, S. B. ; Myer, D. M. ; Olenick, D. J. ; Peipert, J. D. ; Rodrigue, J. R. ; Schwab, K. ; Segev, D. ; Shater, M. ; Shim, P. ; Steffens, E. ; Stencel, S. ; Stevens, M. ; Tenge, S. ; Thompson, B. ; Wang, J. H. ; the Living Donor Collective participants. / The Living Donor Collective : A Scientific Registry for Living Donors. In: American Journal of Transplantation. 2017 ; Vol. 17, No. 12. pp. 3040-3048.
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Kasiske, BL, Asrani, SK, Dew, MA, Henderson, ML, Henrich, C, Humar, A, Israni, AK, Lentine, KL, Matas, AJ, Newell, KA, LaPointe Rudow, D, Massie, AB, Snyder, JJ, Taler, SJ, Trotter, JF, Waterman, AD, Bailey, R, Barber, A, Berndt, L, Danovitch, GM, Dunbar-Forrest, M, Follmer, R, Haydel, B, Hunt, HF, Kacani, PJ, Leander, SA, Levey, AS, Lewis, MA, Mathews, SB, Myer, DM, Olenick, DJ, Peipert, JD, Rodrigue, JR, Schwab, K, Segev, D, Shater, M, Shim, P, Steffens, E, Stencel, S, Stevens, M, Tenge, S, Thompson, B, Wang, JH & the Living Donor Collective participants 2017, 'The Living Donor Collective: A Scientific Registry for Living Donors', American Journal of Transplantation, vol. 17, no. 12, pp. 3040-3048. https://doi.org/10.1111/ajt.14365

The Living Donor Collective : A Scientific Registry for Living Donors. / 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.; Danovitch, G. M.; Dunbar-Forrest, M.; Follmer, R.; Haydel, B.; Hunt, H. F.; Kacani, P. J.; Leander, S. A.; Levey, A. S.; Lewis, M. A.; Mathews, S. B.; Myer, D. M.; Olenick, D. J.; Peipert, J. D.; Rodrigue, J. R.; Schwab, K.; Segev, D.; Shater, M.; Shim, P.; Steffens, E.; Stencel, S.; Stevens, M.; Tenge, S.; Thompson, B.; Wang, J. H.; the Living Donor Collective participants.

In: American Journal of Transplantation, Vol. 17, No. 12, 01.12.2017, p. 3040-3048.

Research output: Contribution to journalArticle

TY - JOUR

T1 - The Living Donor Collective

T2 - A Scientific Registry for Living Donors

AU - Kasiske, B. L.

AU - Asrani, S. K.

AU - Dew, M. A.

AU - Henderson, M. L.

AU - Henrich, C.

AU - Humar, A.

AU - Israni, A. K.

AU - Lentine, K. L.

AU - Matas, A. J.

AU - Newell, K. A.

AU - LaPointe Rudow, D.

AU - Massie, A. B.

AU - Snyder, J. J.

AU - Taler, S. J.

AU - Trotter, J. F.

AU - Waterman, A. D.

AU - Bailey, R.

AU - Barber, A.

AU - Berndt, L.

AU - Danovitch, G. M.

AU - Dunbar-Forrest, M.

AU - Follmer, R.

AU - Haydel, B.

AU - Hunt, H. F.

AU - Kacani, P. J.

AU - Leander, S. A.

AU - Levey, A. S.

AU - Lewis, M. A.

AU - Mathews, S. B.

AU - Myer, D. M.

AU - Olenick, D. J.

AU - Peipert, J. D.

AU - Rodrigue, J. R.

AU - Schwab, K.

AU - Segev, D.

AU - Shater, M.

AU - Shim, P.

AU - Steffens, E.

AU - Stencel, S.

AU - Stevens, M.

AU - Tenge, S.

AU - Thompson, B.

AU - Wang, J. H.

AU - the Living Donor Collective participants

PY - 2017/12/1

Y1 - 2017/12/1

N2 - 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.

AB - 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.

KW - Scientific Registry for Transplant Recipients (SRTR)

KW - donors and donation

KW - donors and donation: donor follow-up

KW - donors and donation: living

KW - editorial/personal viewpoint

KW - organ transplantation in general

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Kasiske BL, Asrani SK, Dew MA, Henderson ML, Henrich C, Humar A et al. The Living Donor Collective: A Scientific Registry for Living Donors. American Journal of Transplantation. 2017 Dec 1;17(12):3040-3048. https://doi.org/10.1111/ajt.14365