Abstract: INFO17
A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network
Session Information
- Informational Posters
November 04, 2021 | Location: On-Demand, Virtual Only
Abstract Time: 10:00 AM - 12:00 PM
Category: Educational Research
- No subcategory defined
Authors
- Inker, Lesley Ann, Tufts Medical Center, Boston, Massachusetts, United States
- Barr, Anne, Brown and Toland Medical Group, Oakland, California, United States
- Chang, Alex R., Geisinger Health, Danville, Pennsylvania, United States
- Ferrè, Silvia, National Kidney Foundation, New York, New York, United States
- Forfang, Derek L., National Kidney Foundation, New York, New York, United States
- Gwadry-Sridhar, Femida, Pulse Infoframe, London, Ontario, Canada
- Mitchell, Kristi, Avalere Health, Washington, District of Columbia, United States
- Rocco, Michael V., Wake Forest University School of Medicine, Winston-Salem, North Carolina, United States
- Willis, Kerry, National Kidney Foundation, New York, New York, United States
Description
Background: People with kidney disease may not know the ramifications of their disease or what can be done to preserve kidney function and avoid complications. The NKF launched the first national U.S. kidney disease patient registry, the “NKF Patient Network”, to accelerate kidney disease research, clinical care, drug development, and health policy decisions, and to give patients the tools they need to stay educated and healthy.
Methods: The Network is a longitudinal observational cohort study that collaborates with health systems to obtain both electronic healthcare records (EHR) and patient-entered data. Eligible people with kidney disease at any stage, age >17 years, are identified through EHR data review, referral by a provider, or are recruited through the NKF’s outreach campaign. Patients self-enroll into the online registry (https://www.kidney.org/nkfpatientnetwork) and share their experiences and health data through a secure portal where they can find education, tips, and support. Research partners can view aggregate data through a collaboration portal. The first health system partner is Geisinger. Pulse Infoframe is the informatics and technology partner that developed the registry on its healthieTM 2.0 AWS cloud platform.
Results: In a feasibility study conducted from July to December 2020, a total of 105 people consented (77 from the NKF and 28 from Geisinger). During the national launch in February through June 2021, 557 new people (69.4% of patients 50-70 years old, 53.5% are female, and >80% are non-Hispanic White) located in 41 U.S. states were enrolled through community outreach. Based on self-reported data, 33% of people have stage 5 or end-stage kidney disease and 35% have stage 3 CKD. About 35% of people completed quality-of-life questionnaires. Recruitment projections expect between 1,000 and 2,000 U.S. patients by March 2022.
Conclusion: The NKF Patient Network unites the efforts of multiple stakeholders in the fight against kidney disease. It will accelerate kidney disease research focused on patient outcomes and priorities and will facilitate the planning and implementation of clinal trials that will ultimately help develop new treatments for kidney disease.
Funding
- Commercial support - Foundational support was provided through a collaboration with Bayer AG. Principal sponsorship was provided by AstraZeneca. Additional support was provided by Boehringer-Ingelheim.