Among 80 participants of the NKF Patient Network, a national US kidney disease registry, 60% were not aware of their kidney function level.
The NKF Patient Network (NKFPatientNetwork.org) is a nationwide kidney disease patient registry created to improve the lives of people with kidney disease through research, clinical care, and drug development. The Network has a secure portal for participants to share their experiences and data, and for providers to upload electronic health records upon patient consent. The Network also offers individualized education and support. In this feasibility study published in the American Journal of Kidney Diseases (AJKD), researchers found low awareness of kidney disease for many participants and a challenge in recruiting vulnerable populations. These are short-term goals of the Network following the national launch in February 2021. Overall, the Network will facilitate real-world data collection to inform the development of patient-centered research, care, and treatments for people with kidney disease.
ARTICLE TITLE: A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network
AUTHORS: Lesley A. Inker, MD, MS, Silvia Ferrè, PhD, MS, Mary Baliker, BS, Anne Barr, MBA, Lisa Bonebrake, BA, Alexander R. Chang, MD, MS, Juhi Chaudhari, MPH, Kerry Cooper, MD, Clarissa J. Diamantidis, MD, Derek Forfang, BS, Barbara Gillespie, MD, Petros Gregoriou, MBA, Femida Gwadry-Sridhar, RPh, MS (epi), PhD, Keren Ladin, PhD, MSc, Cari Maxwell, BS, Kristi R. Mitchell, MPH, Kathleen P. Murphy, PhD, Muhammad Rakibuz-Zaman, MBBS, MSc (Epi), MPH, Michael V. Rocco, MD, MSCE, Leslie A. Spry, MD, Amit Sharma, MD, Navdeep Tangri, MD, PhD, Curtis Warfield, MS, Kerry Willis, PhD, on behalf of the NKF Patient Network Governance Committees
DOI: https://doi.org/10.1053/j.ajkd.2022.07.016
