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APOL1 Genetic Testing in African Americans
APOL1 Genetic Testing in African Americans: Exploring Attitudes About Genetic Risk to Improve Comprehensive Kidney Risk Assessment for Patients and Families
Who can join
Ages 18 to 90 · All sexes · Healthy volunteers welcome
Full eligibility criteria
Inclusion Criteria: * Ages 18-90 * Self-Identified as Black/African American. Race will be self-identified. Patients of African ancestry who identify as multi-racial are also eligible to participate. Exclusion Criteria: * Cognitively impaired/unable to provide consent * Terminally ill * Renal replacement therapy (RRT), e.g., (but not limited to) hemodialysis, peritoneal dialysis
About the study
Recent breakthroughs in medical genetics have discovered that a portion of kidney failure affecting the Black community is mediated by coding variants in a gene called apolipoprotein L1 (APOL1) - and that genetic variants, not race - account for increased risk. For APOL1 genetic testing to be applied in a manner that improves patient care and outcomes, more information is needed regarding associations of genotype with clinical parameters related to kidney health. Further, understanding patient perceptions about knowledge of the results of APOL1 genetic testing, and how that impacts patient engagement with management of hypertension and other renal risk factors, is urgently needed.
* In a Phase 1 pilot study, we offered APOL1 genetic testing to Black patients seen in our Hypertension and Nephrology clinics at Saint Louis University, an academic medical center that serves the local urban community, and surveyed patients on attitudes and concerns about APOL1 genetic testing. 144 participants were enrolled in Phase 1. * In the Phase 2 study, we will advance this important work in our community by offering participation to a broader patient base, including patients seen in Internal and Family Medicine clinics, SLU Hospital, as well as to first-degree relatives and spouses of SLUCare participants. This expansion seeks to advance understanding of environment-gene interactions, improve risk prediction, and target management of potentially modifiable risk factors.
What is being tested
- Assessment of the frequency of APOL-1 renal risk variant in the black population, and evaluating their attitudes about genetic testing and APOL1 genotype via self-administered surveys (genetic)
Sponsor: St. Louis University · Participants: 600 · Started: Jan 24, 2019
Contact the study team
- Krista Lentine, PhD, MD · Phone: 314-257-3760
Official record on ClinicalTrials.gov — NCT05656261
Locations in the U.S.
| Missouri | SSM Health Saint Louis University Hospital, St Louis |
Conditions
From ClinicalTrials.gov, data retrieved Sep 29, 2026. Each study sets its own eligibility; the study team decides who can join.