A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network

Abstract

Rationale & objective: The National Kidney Foundation (NKF) launched the first national US kidney disease patient registry, the NKF Patient Network, that is open to patients throughout the continuum of chronic kidney disease (CKD). The Network provides individualized education and will facilitate patient-centered research, clinical care, and health policy decisions. Here, we present the overall design and the results of a feasibility study that was conducted July through December 2020.

Study design: Longitudinal observational cohort study of patient-entered data with or without electronic health care record (EHR) linkage in collaboration with health systems.

Setting & participants: People with CKD, age≥18 years, are invited through their provider, NKF communications, or national outreach campaign. People self-enroll and share their data through a secure portal that offers individualized education and support. The first health system partner is Geisinger.

Exposure: Any cause and stage of CKD, including dialysis and kidney transplant recipients.

Outcome: Feasibility of the EHR data transfer, participants' characteristics, and their perspectives on usability and content.

Analytical approach: Data were collected and analyzed through the registry portal powered by the Pulse Infoframe healthie 2.0 platform.

Results: During the feasibility study, 80 participants completed their profile, and 42 completed a satisfaction survey. Mean age was 57.5 years, 51% were women, 83% were White, and 89% were non-Hispanic or Latino. Of the participants, 60% were not aware of their level of estimated glomerular filtration rate and 91% of their urinary albumin-creatinine ratio.

Limitations: Challenges for the Network are lack of awareness of kidney disease for many with CKD, difficulty in recruiting vulnerable populations or those with low digital readiness, and loss to follow-up, all leading to selection bias.

Conclusions: The Network is positioned to become a national and international platform for real-world data that can inform the development of patient-centered research, care, and treatments.

Keywords: Chronic kidney disease (CKD); dialysis; electronic health records (EHRs); kidney transplant; patient activation; patient outreach; patient registry; patient-reported experience measures (PREMs); patient-reported outcome measures (PROMs); real-world data; stakeholder engagement.