When good intentions are not enough: Obtaining follow-up data in living kidney donors

E. S. Ommen, D. LaPointe Rudow, R. K. Medapalli, B. Schröppel, B. Murphy

Research output: Contribution to journalReview articlepeer-review

31 Scopus citations


The Organ Procurement Transplant Network/United Network for Organ Sharing (OPTN/UNOS) has increased the amount of data collected before and after donation and increased the duration of donor follow-up to 2 years, yet there is evidence that reporting is incomplete. We examined the frequency of missing data in the OPTN/UNOS donor follow-up registry and found that reporting rates were low, particularly for donors who may have limited access to health care. We argue that a national donor follow-up registry is essential to ensure transparency in ascertaining long-term health outcomes among all living donors and in providing assessments of quality assurance within transplant programs. We have suggested approaches to strengthen the donor follow-up registry system. These include setting clear and high standards for follow-up reporting, a system of incentives and penalties that would motivate transplant centers to comply with these standards and would encourage donors to follow-up and lifelong follow-up reporting by primary care providers. We argue that the US government must provide funding to support a donor follow-up registry that can allow for meaningful and valid conclusions, in recognition of donors' public service and to maintain trust in the system of living organ donation.

Original languageEnglish
Pages (from-to)2575-2581
Number of pages7
JournalAmerican Journal of Transplantation
Issue number12
StatePublished - Dec 2011


  • Donor follow-up
  • UNOS database analysis
  • live donor transplantation
  • renal transplantation


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