KHI Current Project

Roadmap for Advancing Awareness, Genetic Testing, and Clinical Studies of APOL1 Kidney Disease

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APOL1 kidney disease (APOL1 KD) is a driving force behind health disparities in chronic kidney disease (CKD) characterized by worse health outcomes for those of African ancestry. Despite this, there is little acknowledgment of APOL1 KD in kidney care, and only a few clinical studies currently seek to develop targeted treatments for this disease.

Recognizing these gaps, the Kidney Health Initiative (KHI) initiated this effort to examine the APOL1 KD landscape and develop a roadmap to support the kidney health community in a coordinated effort to address APOL1 KD.

The three goals of this roadmap are to: increase APOL1 KD awareness, increase access to and awareness of genetic testing and associated counseling, and empower patients with APOL1 KD to make informed decisions about participating in clinical studies. These three goals also underpin the critical need to address the racial disparities in CKD that disproportionately burden people of African ancestry. By working toward and achieving these goals, we hope to make progress in closing the racial disparities gap in CKD.

Steering Committee Members

Steering CommitteeChristine Lee, PhD, PharmD FDA Office of Minority Health and Health Equity
Steering CommitteeOgo Egbuna, MDVertex Pharmaceuticals
Steering CommitteePatrick O. Gee, Sr., PhD, JLCKHI Patient and Family Partnership Council, APOLLO Community Advisory Committee, Evidation Health
Steering CommitteeSusanne B. Nicholas, MD, PhDASN Health Care Justice Committee (Clinical Care and Innovation Team); University of California at Los Angeles
Steering CommitteeUptal D. Patel, MDKHI Board of Directors, HiBio
Steering CommitteeBarbara Gillespie, MD, MSKHI Board of Directors, Fortrea, University of North Carolina
Steering CommitteeGlenda V. Roberts KHI Board of Directors, APOLLO Community Advisory Committee, Center for Dialysis Innovation, Kidney Research Institute
Steering CommitteeAliza M. Thompson, MD, MSKHI Board of Directors, FDA Center for Drug Evaluation and Research

If you have any questions, please contact KHI at