by Bill Snyder
Vanderbilt University Medical Center is participating in a national study aimed at answering some hard questions about kidney transplantation in the African American community, with the goal of improving patient outcomes.
Black Americans are nearly four times more likely than whites to develop kidney failure requiring dialysis. Up to 70% of this excess risk is attributed to variations in the apolipoprotein-1 (APOL1) gene that are associated with development of kidney disease and which are found only in people of African ancestry.
The impact of APOL1 variants on the viability of donated kidneys and the health of living kidney donors has yet to be determined. Meanwhile, a task force has recommended removing a race-based calculation of kidney function that has delayed care and lengthened transplant waiting times for Black Americans.
The observational study by the APOL1 Long-term Kidney Transplantation Outcomes (APOLLO) Network aims to conduct genetic testing of and follow 2,600 kidneys donated by carriers of APOL1 variants as well as the patients who receive them.
The goal is to determine how APOL1 variants in donor kidneys (living or deceased) affect long-term graft survival. “We’re going to confirm that, one way or another,” said Kelly Birdwell, MD, MSCI, assistant professor of Medicine in the Division of Nephrology and principal investigator leading VUMC’s participation in the study.
Clarifying the role that these genetic variants play in the success or failure of kidney transplants could lead to fewer discarded kidneys and increase the supply of kidneys available for transplant, she noted. Currently about 100,000 people nationwide are on the kidney transplant waiting list.
VUMC is one of 13 clinical centers in the APOLLO Network, which is working with the nation’s transplant centers, organ procurement organizations and the United Network for Organ Sharing to enroll donors and follow transplant outcomes. Wake Forest School of Medicine in Winston-Salem, North Carolina, is the network’s coordinating center.
The study, now in its third year of recruitment, is funded by the National Institutes of Health (NIH), particularly the National Institute of Diabetes and Digestive and Kidney Diseases.
A key feature of the study is the involvement of the APOLLO Community Advisory Council, comprised of Black kidney transplant recipients, donors and family members who provide input into research protocols and how best to inform donors and their families about the importance of participating in the study.
The council advised researchers to obtain consent from living donors and families of deceased donors before their kidneys are included in the study. Yet because of long-standing distrust of medical research in the African American community, about 20% of donor families do not give consent, Birdwell said.
“Part of this study is just to try to increase the conversation,” she said.
Glenda Roberts understands. A Black kidney transplant recipient from Seattle, she serves on the APOLLO Community Advisory Council. She also was a member of the National Kidney Foundation and American Society of Nephrology task force that last week recommended removing an artificial, race-based calculation in diagnosing kidney disease.
“It’s so important to have a conversation with the community, so that you help to build trust and encourage more people to participate in research,” said Roberts, director of External Relations and Patient Engagement in the University of Washington Center for Dialysis Innovation and Kidney Research Institute.
Through the council, “this is one of the first large-scale NIH studies involving people in the community who are affected by the research and who are providing advice to the scientific community,” she said. “That is a huge message.”
Birdwell agreed. “To make (the council) a formal part of how the NIH is conducting this research … it’s setting an example for how this could be done in future clinical research grants like this,” she said.
