Focal segmental glomerulosclerosis (FSGS), minimal change disease (MCD), and membranous nephropathy (MN)—collectively referred to as primary nephrotic syndrome—are rare but serious kidney diseases that pose substantial physical, psychological, and financial burdens and often lead to major medical complications including kidney failure requiring dialysis. Diagnostic, prognostic, and therapeutic advances in the field have been stunted by the rarity of the condition, so patients experience significant lag times to receive diagnostic confirmation, limited options for effective treatment, and numerous barriers to efficient coordination of care. Our collaborative group will develop the NephCure Kidney Network (NKN) as a Patient-Powered Research Network (PPRN) to serve as a resource for comparative effectiveness research to improve care and outcomes for these patients.
In this project, we will transform the NKN from a static repository of cross-sectional data to a rich clinical and patient-reported outcomes (PRO) database to facilitate efficient, high-impact research. Our team is composed of specialists in adult and pediatric clinical nephrology, clinical research in nephrotic syndrome, epidemiology, patient advocacy, and data management from Arbor Research Collaborative for Health (Arbor Research), the NephCure Foundation (NephCure), and the University of Michigan (U-M). We plan to establish network governance with active patient participation, recruit a diverse and representative group of patients, collect data elements that are interoperable across research networks, and build capacity for vendor-agnostic collection of electronic health data and the use of mobile applications to collect data from participants.
Success of the network will have applications to conditions with clinical overlap (such as obesity and chronic kidney disease), as well as to other rare diseases that share similar barriers to improving research, treatments, and outcomes for patients.
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^Bruce Robinson, MD, MS, FACP was the original principal investigator for this project.