[Brussels, Belgium] — Kidney Disease: Improving Global Outcomes (KDIGO) is pleased to announce the publication of the report from its Controversies Conference on APOL1 Kidney Disease in the journal Kidney International. Co-chaired by Akinlolu Ojo, MD (United States) and Ifeoma Ulasi, MD (Nigeria) and held in Accra, Ghana, the conference brought together an international group of scientists, clinicians, and patient representatives to assess current knowledge and chart a course forward for addressing a pressing and inequitable burden in kidney health.
The three-day conference covered a range of topics with the goal of advancing understanding and care of APOL1 kidney disease, including current terminology, disease mechanisms, regional and global epidemiology, diagnostic tools, the promise of targeted therapies, and ethical considerations in genetic testing.
“This report represents a milestone in global kidney health,” said Dr. Ojo. “Given the prevalence of APOL1 high-risk genotypes in regions of West Africa, the burden of APOL1 kidney disease is high and potentially catastrophic. Our report highlights the urgency of understanding how high-risk genotypes, along with additional factors, contribute to the development and progression of kidney disease as well as the importance of advancing biomarker development and accelerating therapeutic trials that can improve outcomes for millions of people, particularly in Sub-Saharan Africa and throughout the global African diaspora.”
The group emphasized the importance of regional data and infrastructure, particularly in countries with a high prevalence of APOL1 risk variants, such as Nigeria and Ghana. The report calls for expanded epidemiological research in underrepresented populations, including those in the Caribbean and Latin America. It also outlines future research priorities across basic science, clinical care, and health systems, with an emphasis on equity and inclusion.
“As we face the devastating burden of APOL1 kidney disease, it is vital to build research infrastructure, enhance genetic literacy, and support ethically sound testing practices. We must also center the experiences of patients and families,” said Dr. Ulasi. “This report is not just a scientific summary—it is a call to action for equitable investment in research, prevention, and treatment. The promise of targeted therapies is real, but we need sustained global focus to turn that promise into accessible care.”
Download the conference report or read the report in Kidney International.