GOAL: CureGN is a large multi-center, long-term observational study of patients with Nephrotic Syndrome and other glomerular diseases, which aims to improve the diagnosis, treatment and outcomes of patients affected by these diseases. This study, which began patient enrollment from 64 clinical sites in December, 2014, will follow 2,400 patients with Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), membranous nephropathy (MN), or IgA Nephropathy/Henoch Schonlein Purpura.
WHO CAN PARTICIPATE: Adults and children seen at a CureGN site (click here for list) with one of the four diseases (FSGS, MCD, MN or IgA Nephropathy/HSP) diagnosed by kidney biopsy may be eligible. The kidney biopsy must have happened within the past 5 years.
COMMITMENT: Participants spend an extra 15-20 minutes at their normal nephrologist appointments and answer questions about health history and how they are feeling. Participants are seen at least once per year in-person and additional study visits can occur by phone. For each in-person visit, participants are asked to give a blood and urine sample.
WHY IT IS IMPORTANT: CureGN is currently the largest network of clinical sites enrolling patients in a single observational study for Nephrotic Syndrome. CureGN plans to follow these patients for many years to understand long term impacts of the disease and what treatments are effective.