# Development of a Robust Strategy for Living Kidney Donor Follow-up and Engagement

> **NIH NIH R03** · NEW YORK UNIVERSITY SCHOOL OF MEDICINE · 2022 · $127,125

## Abstract

Project Summary: Developing a Robust Strategy for Living Donor Follow-up and Engagement
There are more than 150,00 living kidney donors in the US, and the number of new donors is increasing yearly.
Understanding the risks and sequelae of donation is a practical requirement for expanding live donor kidney
transplantation and an ethical requirement for supporting informed consent and honoring an altruistic act. This
requires the collection of granular follow-up data in donors, and a comparison to healthy non-donors. To date,
national efforts at kidney donor follow-up and long-term engagement have failed. As a living kidney
donor myself, I am intimately aware of the profound and systemic failures in post-donation surveillance from
both the donor-level and the health system-level. In 2013 a national policy mandating transplant centers meet
standards for living donor follow-up was implemented, yet this policy has proven nearly impossible for
transplant centers, with fewer than 50% successful in meeting the mandate.
Continued engagement with transplant centers not only allows a better scientific understanding of the
implications of donation, but also allows careful surveillance of donors to identify early physiologic changes
(such as hypertension) and intervene before these become major adverse outcomes. Furthermore, a proper
healthy non-donor cohort has never been successfully captured and studied. To improve this ongoing
failure, in 2017 we launched a pilot Living Donor Collective (LDC) at 10 kidney transplant centers,
centralized though the Scientific Registry of Transplant Recipients (SRTR).
In an effort to improve living donor follow-up in a systematic, scientific manner that can be disseminated to
centers across the country, we will take the important first steps of evaluating how the 10 pilot transplant
centers and the SRTR implemented the LDC and use this information to plan the next iteration of this important
endeavor. Since only 10 centers participated in the pilot, out of 273 transplant centers in the US, it is critical to
understand barriers to implementation across a wide spectrum of transplant center characteristics. Guided by
an implementation science framework and a mixed methods approach, we aim: (1) to understand LDC
implementation among pilot centers and SRTR, (2) conduct a formative evaluation and assess transplant
center readiness and capacity for participation in the LDC across the US, and (3) create an implementation
strategy to refine and expand the LDC.
This study will provide a comprehensive understanding of implementation challenges, successes, and failures
of a centralized program for living donor follow-up. This provides the foundation for all U.S. transplant centers
to participate, solves a historically unsolvable and embarrassing health system challenge, and is necessary to
prepare a future R01 to develop and implement centralized living donor follow-up nationally.

## Key facts

- **NIH application ID:** 10426492
- **Project number:** 1R03DK132222-01
- **Recipient organization:** NEW YORK UNIVERSITY SCHOOL OF MEDICINE
- **Principal Investigator:** Macey Leigh Levan
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $127,125
- **Award type:** 1
- **Project period:** 2022-08-15 → 2024-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10426492

## Citation

> US National Institutes of Health, RePORTER application 10426492, Development of a Robust Strategy for Living Kidney Donor Follow-up and Engagement (1R03DK132222-01). Retrieved via AI Analytics 2026-05-28 from https://api.ai-analytics.org/grant/nih/10426492. Licensed CC0.

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