(New York, NY) – (March 19, 2026) – The National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (NKF KDOQI) has released two complementary commentaries to support more holistic, equitable, and effective care for individuals and families affected by ADPKD. Published this week in the American Journal of Kidney Diseases, these commentaries highlight expert clinical guidance and patients’ experiences of living with ADPKD.
The KDOQI Commentary on Kidney Disease: Improving Global Outcomes (KDIGO) 2025 Clinical Practice Guideline for the Evaluation, Management, and Treatment of ADPKD provides critical context for applying the internationally focused KDIGO guideline within the U.S. healthcare system. Authored by adult and pediatric nephrologists, the commentary examines and affirms key recommendations on diagnosis, management of kidney and non-kidney aspects of the disease, CKD progression factors, and disease-modifying therapies.
The commentary also highlights real-world implementation challenges such as access to specialized imaging, interpretation and utility of genetic testing, multidisciplinary care, and insurance coverage. “These commentaries reflect how important it is to translate evidence into care that works in real-world clinical settings,” said Kerry Willis PhD, Chief Scientific Officer of NKF. “It’s exciting to see how the toolbox of therapeutic approaches and diagnostic tools for early detection of ADPKD continues to expand.”
Complementing this clinical perspective, the KDOQI Patient Perspective Commentary elevates the voices of people living with ADPKD and their care partners. Developed by patient advocates from the National Kidney Foundation and the PKD Foundation, this commentary highlights priorities that matter most to patients and families, including shared decision-making, mental and emotional health, care coordination, and clear communication across specialties.
Together, these publications reinforce a shared message: advancing ADPKD care requires not only evidence-based clinical guidance, but also meaningful inclusion of patient perspectives “Mental health, family impact, and daily disease management are often invisible in traditional clinical guidelines, yet they shape every aspect of living with ADPKD,” said Kelli Damron, Director of Patient Engagement at NKF. “True partnership means listening to patients, respecting their expertise, and addressing both the physical and emotional burden of this lifelong condition.”
Both commentaries identify systemic barriers that can affect outcomes in the United States, including fragmented care across multiple specialists, limited ADPKD knowledge among general pediatricians, and insurance-related obstacles to early diagnosis, referrals, and treatment. The authors advocate for stronger care coordination, expanded education across medical disciplines, and greater access to patient navigators to reduce the burden on families and improve continuity of care.
About Kidney Disease
In the United States, 37 million adults are estimated to have kidney disease - also known as chronic kidney disease (CKD) - and approximately 90 percent don't know they have it. About 1 in 3 adults in the U.S. are at risk for kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, and family history. People of Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander descent are at increased risk for developing the disease. Black or African American people are about four times as likely as White people to have kidney failure. Hispanic people experience kidney failure at about double the rate of White people.
About the National Kidney Foundation
The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis, and transplantation. For more information, visit www.kidney.org.
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