Details and Information
Areas of Focus: Primary Nephrotic Syndrome (Focal Segmental Glomerulosclerosis [FSGS], Minimal Change Disease [MCD], and Membranous Nephropathy [MN])
Population Characteristics: All
Organization: Arbor Research Collaborative for Health
Principal Investigator: Elizabeth Cope, PhD, MPH
Co-Principal Investigator: Lauren Lee
About NephCure Kidney Network
The NephCure Kidney Network is a growing community of patients, their families, clinicians, and researchers united by the quest for better care and treatments for those with primary Nephrotic Syndrome, a condition with no known cause, cure, or FDA-approved drugs. The integration of a rich database of patient-reported experiences, preferences, and outcomes with longitudinal clinical data from electronic health records (EHRs) provides the research community with an unprecedented resource for understanding the paths faced by patients suffering from these rare and devastating kidney diseases, as well as the opportunities to make it a faster, safer journey.