National Kidney Foundation's KidneyCARE Study Reaches First-Year Enrollment Milestone with Over 1,000 Participants

National Kidney Foundation's KidneyCARE™ Study: A Milestone in Chronic Kidney Disease Research

The National Kidney Foundation (NKF) recently celebrated a remarkable achievement in its KidneyCARE™ Study, having surpassed the milestone of enrolling over 1,000 patients from all 50 states and Puerto Rico in just its first year. This groundbreaking study aims to improve patient outcomes by capturing both patient-reported data and Electronic Health Record (EHR) information. The study, which focuses on chronic kidney disease (CKD), represents a significant step forward in understanding the complexities of kidney health across diverse populations.

Empowering Patients Through Participation

Kevin Longino, the CEO of NKF and a kidney transplant recipient, emphasizes the significance of patient participation in research efforts by stating, "This milestone demonstrates the power of patient participation in research. 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."

Open to English- and Spanish-speaking adults over the age of 18, the KidneyCARE Study targets individuals with various types of kidney conditions, from those in early stages to those undergoing dialysis or having received kidney transplants. Participants complete online surveys that gather information on their health status, family history, lifestyle choices, and personal experiences with kidney disease. This integration of patient-reported insights with clinical data from EHRs is positioned to provide a richer understanding of CKD.

Understanding Diverse Kidney Conditions

The KidneyCARE Study includes individuals with a broad spectrum of kidney-related conditions such as diabetes and hypertension—common causes of CKD—as well as rarer diseases like IgA Nephropathy, Lupus Nephritis, and Alport Syndrome. By capturing these diverse experiences, the research aims to reveal patterns in disease progression, which could inform the development of targeted treatments tailored to specific patient populations.

Patient Benefits Through Participation

Patients who join the KidneyCARE Study not only contribute to vital research, but they also gain access to a wealth of educational resources via a dedicated patient portal. This portal provides essential information on kidney disease, effective self-management strategies, and updates on clinical trial opportunities. This way, participants can leverage valuable knowledge to support their individual health journeys while advocating for their needs in the healthcare system.

Collaborations with Health Systems

To further the study’s reach, the KidneyCARE initiative collaborates with several prominent health systems, including Geisinger Health System, which has begun enrolling patients in their facilities. These partnerships enhance the robustness of the dataset by linking real-world clinical data from patients’ EHRs with their personal experiences, ultimately yielding valuable insights into both the medical and emotional dimensions of living with CKD.

Lesley Inker, MD, the Principal Investigator for the KidneyCARE Study and a Professor of Medicine at Tufts University School of Medicine, stated, "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. 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." She emphasized the potential of the study to reveal how the experiences of patients with CKD evolve over time.

Support from Leading Sponsors

The success of the KidneyCARE Study is made possible through the generous support of major sponsors, including Bayer AG, AstraZeneca, Novartis, Boehringer Ingelheim, and Apellis Pharmaceuticals. Their commitment to advancing kidney research is instrumental in establishing an invaluable resource for researchers and the healthcare community alike.

How to Join the Study

Adults in the United States living with chronic kidney disease can contribute to this important online study from the comfort of their own homes by visiting kidneycarestudy.org. For inquiries regarding the study, interested participants can reach out to the KidneyCARE Study Team directly via email.

The Role of the National Kidney Foundation

The National Kidney Foundation continues to revolutionize the fight against kidney disease, advocating for the elimination of preventable cases, accelerating innovations to enhance patient experiences, and addressing structural disparities within kidney care, dialysis, and transplantation. This initiative reflects their dedication to transforming the landscape of kidney health across the nation.