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

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.

Suboptimal vitamin D screening in older patients with compromised skeletal health.

RATIONALE, AIMS AND OBJECTIVES: Increasing number of primary care visits for osteoporosis by older patients combined with new vitamin D screening recommendations necessitate primary care providers (PCPs) to identify and screen at-risk patients. We described prevalence and determinants of vitamin D screening among older patients treated for osteopoenia, osteoporosis and related fractures in academic outpatient primary care clinics (family medicine and geriatric medicine) in Houston, TX. METHODS: Electronic chart review collected data on patients ≥50 years old from January 2008 to December 2010. Orders for serum 25-hydroxy vitamin D indicated vitamin D screening. Differences in patient characteristics were described between the groups with and without vitamin D screening. Age, body mass index, racial/ethnic background, bone-promoting medication (BPM) use and clinic types (family medicine versus geriatric medicine) were determinants for vitamin D screening in the regression analysis. RESULTS: Patients were mostly women (95%), Caucasian (65%) and had a mean age of 69 ± 12 years. Twenty-two per cent of the family medicine clinic patients (total n = 78) and 51% of the geriatric medicine clinics patients (total n = 70) were screened. Older age (odds ratio, 0.94 confidence interval = 0.90-0.99) and BPM use (2.58, 1.03 to 6.45) were significant positive determinants for vitamin D screening. CONCLUSIONS: In primary care clinics, vitamin D screening remains low among patients diagnosed with osteopoenia, osteoporosis and fractures. In light of new guidelines, suboptimal screening in the vulnerable older patients is disturbing. We recommend increased PCPs' awareness about vitamin D screening guidelines for improving skeletal health in older patients.