NKF's KidneyCARE™ Study Celebrates One-Year Milestone, Enrolling Over 1,000 Patients Nationwide

Kidney disease patient registry empowers individuals with kidney disease while accelerating research to improve patient outcomes

NEW YORK, March 20, 2025 /PRNewswire/ -- The National Kidney Foundation (NKF) is proud to announce that its KidneyCARE (Community Access to Research Equity)™ Study – the first national CKD patient registry that captures both patient-reported and Electronic Health Record (EHR) data – has exceeded its first-year enrollment goal, with over 1,000 patients now participating from all 50 states and Puerto Rico. This nationwide representation is helping to build one of the most comprehensive real-world datasets on chronic kidney disease (CKD), providing new insights into disease progression, gaps in patient care, and the patient experience.

"This milestone demonstrates the power of patient participation in research," said Kevin Longino, CEO of NKF and a kidney transplant recipient. "By sharing their experiences, patients are helping us to better understand the challenges that they face every day. This information helps to advance disease research and ultimately leads to better care for all people living with kidney disease."

Study Overview
The KidneyCARE Study is open to English- and Spanish-speaking adults (ages 18 and older) with any type of kidney disease. This includes individuals with early-stage disease as well as those on dialysis or living with a kidney transplant. Participants complete online surveys about their health status, family history, lifestyle factors, and personal experiences of living with kidney disease. By combining this patient-reported information with clinical data from Electronic Health Records (EHRs), the study provides a deeper understanding of how kidney disease progresses and how this impacts patients' daily lives.

The Registry includes individuals with a wide range of kidney conditions, from diabetes and hypertension – the most common causes of CKD – to rare diseases such as IgA Nephropathy (IgAN), Lupus Nephritis, C3 Glomerulopathy (C3G), Focal Segmental Glomerulosclerosis (FSGS), Polycystic Kidney Disease (PKD), Alport Syndrome, Fabry Disease, and more. By capturing diverse patient experiences, the study is helping to identify patterns in disease progression, which will support the development of targeted treatments.

Benefits to Patients
By participating in the study, patients gain access to educational resources through the study's patient portal. This includes disease-specific information, self-management tools, and information about clinical trial opportunities. By joining the study, patients not only help to advance scientific research, but also receive valuable information to support their own health journey.

Building a Network of Health System Partners
The KidneyCARE Study is collaborating with leading health systems, including Geisinger Health System, which recently began to enroll patients. These partnerships strengthen our dataset by linking real-world clinical data obtained from patients' EHRs with patient-reported experiences. This provides valuable insights into both the clinical and personal aspects of living with CKD.

"Now that we've reached our 1-year milestone and enrolled over 1,000 participants, we are now in a position to gather valuable insights from the data," said Lesley Inker, MD, Principal Investigator for the KidneyCARE Study and Professor of Medicine at Tufts University School of Medicine.  "Although the study is still in its early stages, its broad reach and diverse participation will provide important information about how different populations live with kidney disease. As the KidneyCARE Study grows, we anticipate also being able to appreciate how these journeys change and evolve over time."  

Sponsorships
The KidneyCARE Study is made possible through the generous support of our sponsors: Bayer AG, AstraZeneca, Novartis, Boehringer Ingelheim, and Apellis Pharmaceuticals. Their commitment to advancing kidney research has helped establish this invaluable resource for researchers.

For sponsorship inquiries, please contact: Anthony Gucciardo, NKF Senior Vice President of Strategic Partnerships at: [email protected]

Join the Study
Adults in the U.S. who are living with chronic kidney disease can participate in this online study from the comfort of their homes by visiting: kidneycarestudy.org

For questions about the study, please reach out to the KidneyCARE Study Team at: [email protected]

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.

SOURCE National Kidney Foundation