The launch of the National Kidney Foundation’s first nationwide registry of patients with kidney disease could help link patient data with laboratory and clinical information.
Findings from a feasibility study published in the American Journal of Kidney Diseases support the hope that the first nationwide kidney disease patient registry launched by the National Kidney Foundation (NKF), the NKF Patient Network, could become a national and international platform for data that can inform development of patient care, research, and treatments.
Chronic kidney disease (CKD) is a public health problem that affects 37 million individuals in the United States alone. The NKF Patient Network aims to link patient-entered data on medical history, demographics, lifestyle, and perceptions with clinical and laboratory data to create an interactive community of patients that could enable educational resources and help inform research, clinical care, and health policy decisions.
The feasibility study was conducted from July to December 2020 to collect feedback before the national launch in February 2021. Patients with any stage of kidney disease who are 18 years or older and willing to provide informed consent are able to sign up for the NKF Patient Network.
Participants in the feasibility study were recruited from the members of the NKF’s Kidney Advocacy Committee through email and at the NKF Patient Network’s first health system partner, Geisinger, through letters or emails. The Pulse healthie cloud platform was used to collect data, and electronic health record (EHR) data were shared between Geisinger and the healthie platform. The feasibility study intended to test the EHR data sharing process, collect characteristics of participants enrolled, and assess patient perspectives on usability and included resources in the NKF Patient Network.
There were 98 people included in the study who provided informed consent. A total of 80 participants completed the patient profile, of whom 74% were recruited from the NKF and 26% were from Geisinger. The mean age was 57.7 years, 51.3% were women, and 82.5% were White.
A total of 23.8% of the participants self-reported having CKD stage 5 or end-stage kidney disease, 6.3% were on dialysis, and 57.5% were recipients of kidney transplants. About 30% had a family history of kidney disease.
Many patients were not aware of specifics regarding their kidney disease, with only 40% aware of their estimated glomerular filtration rate (eGFR) and 9% of their urinary albumin/creatinine ratio (UACR). A total of 35% of participants were not aware of their stage of CKD and 5% did not answer. A higher proportion of the Geisinger participants were able to report their UACR compared with the entire cohort (19% vs 5%).
The mean (SD) eGFR was 47 (22) mL/min/1.73 m2, but it was 81 (110) mL/min/1.73 m2 in the participants who were able to report exact eGFR value. Although 91% and 57% of the Geisinger participants had diabetes and hypertension based on EHR data, respectively, only 4 and 7 of those 21 participants reported having those conditions.
A total of 53% of the participants who completed a patient profile also filled out a satisfaction survey. Most patients (69%) found that the patient profile was easy or extremely easy to complete, 60% found the educational resources useful to extremely useful, whereas 29% did not use the educational resources, and 81% of participants were likely to extremely likely to recommend the NKF Patient Network to another patient with kidney disease. Participants liked that the platform was a good way to get information and liked that it was free to access.
However, some participants commented that the informed consent process was too long, the resources were not patient friendly, completing the patient profile was cumbersome, and they received too many emails.
The NKF Patient Network does have some challenges and limitations, the study authors acknowledged. There is a lack of awareness of kidney disease among many patients with CKD, and it will be especially difficult to recruit vulnerable populations or those who have low digital readiness to engage in the network. There was a loss of participants to follow-up in the feasibility study as well. All these challenges could have led to selection bias, the authors noted.
The researchers concluded that the NKF Patient Network holds the potential to “become a national and international longitudinal initiative focused on the diversity of the patient population with CKD and based on real-world observations that can inform the development of patient-centered research, care, and treatments.”
Inker LA, Ferre S, Baliker M, et al; NKF Patient Network Governance Committees. A national registry for people with all stages of kidney disease: the National Kidney Foundation (NKF) Patient Network. Am J Kidney Dis. Published online September 30, 2022. doi:10.1053/j.ajkd.2022.07.016