The KidneyCARE (Community Access to Research Equity) Study: A National Registry for People With All Stages of Kidney Disease (Formerly National Kidney Foundation Patient Network)

What this Trial Is About

Researchers are conducting the KidneyCARE Study, a national registry designed for people at all stages and types of chronic kidney disease (CKD), including those on dialysis and kidney transplant recipients. The study aims to improve patient engagement, research, and public health efforts by collecting comprehensive data from patients and health systems. This observational study is non-interventional, focusing on gathering information to enhance educational resources, clinical research, care, and health policy decisions centered on patients with CKD. Participants in the KidneyCARE Study do not receive any treatments as part of the study. Instead, they self-enroll online and provide personal and health information through a secure portal. The study collaborates with health systems to collect additional electronic health records data. This combined data collection supports research partners who access de-identified aggregate data for analysis and reporting. The study began recruiting in the U.S. and is expanding internationally, starting with Canada. During the study, participants share their experiences and health details via an online platform available at any time. Researchers monitor enrollment numbers over five years as the primary outcome. The study involves no extra tests or medications, making participation voluntary and free. Data collected supports research analysis through approved proposals and helps improve clinical care and health policies. The total participation duration varies as this is an ongoing observational registry.

The KidneyCARE (Community Access to Research Equity) Study