APOL1 Kidney Disease Roadmap

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Drugs

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Education and Resources

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.

Publications & Resources 

Roadmap For Advancing Awareness, Genetic Testing, And Clinical Studies Of APOL1 Kidney Disease

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.

Engagement to Build Trust and Empower

Action 10: Promote APOL1 KD awareness and activism among organizations embedded in communities of African ancestry.

Provider Training

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.

Systemic Efforts to Support Access to Testing

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.

Efforts to Enhance Testing Awareness

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.

Provider Training

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.