KHI Current Project
APOL1 Kidney Disease Roadmap
Introduction
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) developed 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
- 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.
Key Information on the Roadmap:
This roadmap is a resource for health care providers, patients and their families, communities of those at risk, payers, patient advocacy groups, professional societies, policy makers, pharmaceutical and biomedical companies, leaders within communities at risk and other audiences.
Prioritized Action Items:
GOAL 1: Actions to Increase Awareness of APOL1 KD
Focused Educational Efforts to Increase Awareness:- Action 1: Develop, disseminate, and leverage existing resources on CKD, APOL1 KD, and risk factors for persons and communities.
- Action 5: Lead, advocate for, or support efforts for the creation of an ICD-10 code for APOL1 KD.
- Action 10: Promote APOL1 KD awareness and activism among organizations embedded in communities of African ancestry.
- Action 19: Incorporate training about diagnosis and management of rare diseases and genetic-mediated kidney diseases into healthcare education.
GOAL 2: Actions to Increase Genetic Testing of APOL1 KD and Associated Counseling
Provider Training- Action 21: Develop and implement continuing medical education that promotes awareness of APOL1 genetic testing, including options and processes for healthcare providers.
- Action 26: Offer healthcare providers (e.g., nephrologists, primary care providers, pharmacists) and allied health professionals training on GINA to inform patients of their rights.
- Action 28: Promote inclusion of APOL1 in American College of Medical Genetics and Genomics (ACMG) guidance on genes that should be evaluated in individuals undergoing clinical exome and genome sequencing.
- Action 31: Establish trusted relationships with communities of African ancestry to promote APOL1 genetic testing.
GOAL 3: Actions to Empower Patients to Make Informed Decisions Regarding Clinical Study Participation
Community Outreach and Engagement- Action 34: Build community engagement into APOL1 KD clinical studies.
- Action 43: Include clinical study consideration in nephrology guidelines to foster consideration of studies and innovation in the nephrology community.
Click here to download the full roadmap.
To provide feedback on this roadmap, fill out the survey here.
| Steering Committee | Christine Lee, PhD, PharmD | FDA Office of Minority Health and Health Equity |
| Steering Committee | Ogo Egbuna, MD | Vertex Pharmaceuticals |
| Steering Committee | Patrick O. Gee, Sr., PhD, JLC | KHI Patient and Family Partnership Council, APOLLO Community Advisory Committee, Evidation Health |
| Steering Committee | Susanne B. Nicholas, MD, PhD | ASN Health Care Justice Committee (Clinical Care and Innovation Team); University of California at Los Angeles |
| Steering Committee | Uptal D. Patel, MD | KHI Board of Directors, HiBio |
| Steering Committee | Barbara Gillespie, MD, MS | KHI Board of Directors, Fortrea, University of North Carolina |
| Steering Committee | Glenda V. Roberts | KHI Board of Directors, APOLLO Community Advisory Committee, Center for Dialysis Innovation, Kidney Research Institute |
| Steering Committee | Aliza M. Thompson, MD, MS | KHI Board of Directors, FDA Center for Drug Evaluation and Research |
If you have any questions, please contact KHI at khi@asn-online.org