APOL1-Mediated Kidney Disease in the United States (2020–2025): Trends in Research Output, Public Awareness, and Federal Funding

 

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APOL1-Mediated Kidney Disease in the United States (2020–2025): Trends in Research Output, Public Awareness, and Federal Funding

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Benjamin
Bizer
Benjamin Bizer bizer.benjamin@mayo.edu Mayo Clinic Nephrology and Hypertension Rochester United States *
Jose Arriola-Montenegro arriolamontenegro.jose@mayo.edu Mayo Clinic Nephrology and Hypertension Rochester United States -
Charat Thongprayoon thongprayoon.charat@mayo.edu Mayo Clinic Nephrology and Hypertension Rochester United States -
Iasmina Craici craici.iasmina@mayo.edu Mayo Clinic Nephrology and Hypertension Rochester United States -
Wisit Cheungpasitporn cheungpasitporn.wisit@mayo.edu Mayo Clinic Nephrology and Hypertension Rochester United States -
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Variants in the APOL1 gene, initially identified for their protective effect against Trypanosoma brucei, were first linked to kidney disease in 2008 and are now recognized as major risk factors for end-stage kidney disease (ESKD). The high-risk APOL1 variants (G1 and G2) occur almost exclusively in individuals of African ancestry, with about 13% of African Americans, nearly six million people carrying two risk alleles. APOL1-mediated kidney disease (AMKD) includes non-diabetic renal disorders such as focal segmental glomerulosclerosis (FSGS), hypertensive ESKD, lupus nephritis–related ESKD, and HIV-associated nephropathy. Individuals with high-risk genotypes have a 15–30% lifetime risk of ESKD. Although limited financial data exist, AMKD’s strong link to dialysis dependence highlights its substantial economic and societal burden.

We conducted a 5-year PubMed literature search using the terms “APOL1” and “Kidney.” Metadata, including publication date, author affiliations, and journal of publication, were extracted and analyzed with R. Additionally, we performed a 21-year infodemiology analysis using Google Trends to evaluate search activity in the United States for “APOL1 Gene” and related terms from January 2004 to October 2025. Temporal and geographic patterns were assessed, with particular attention to peaks, troughs, and seasonal fluctuations. Finally, we analyzed research grants related to APOL1, examining their geographic distribution, funding amounts, and stated research objectives.

Between January 2020 and May 2025, 490 PubMed-indexed articles were reviewed. The majority of data originated from institutions based in New York, Washington, and North Carolina. Publication activity peaked in 2021 with 96 articles. Analysis of Google Trends data revealed minimal search interest in “APOL1 Gene” since 2004, with related or alternative search terms yielding no results, reflecting low public and research engagement with the topic. The journals publishing the highest number of APOL1-related kidney disease studies included Kidney International Reports, Clinical Journal of the American Society of Nephrology (CJASN), and Kidney International. Public research funding declined in 2021 but has since increased, reaching a peak of over $36 million in 2024, when 77 projects were funded, the highest annual total observed during the study period.

Geographic map of the United States indicating number of affiliations in the published PubMed research from 2020-2025

Apol1-related funding and number of projects funded between the year 2020 and 2025

April 30th 2024 marked the first AMKD-Awareness Day in the United States, after which search interest increased modestly compared with prior years. Nonetheless, overall public engagement remains low, highlighting limited awareness of this condition. Despite substantial public funding for APOL1-related research, educational outreach to both patients and healthcare professionals appears insufficient. Targeted, data-driven awareness initiatives are warranted to improve education of this prevalent genetic risk factor, particularly among underserved and disproportionately affected populations.

Kewords