Nephrotic Syndrome Study Network Observing FSGS, MCD, and Membranous Nephropathy Collecting Data and Samples to Improve Understanding and Treatment

What this Trial Is About

Nephrotic Syndrome, including Minimal Change Disease MCD, Focal Segmental Glomerulosclerosis FSGS, and Membranous Nephropathy MN, causes a significant health and financial burden, representing about 12% of end-stage renal disease cases. Current treatments often lack a clear biological basis and can be toxic, with limited effectiveness. This trial aims to better understand these rare kidney diseases by collecting long-term observational data and biological samples through the Nephrotic Syndrome Study Network, a collaborative research consortium. Participants are grouped into cohorts based on biopsy-confirmed diagnoses of FSGSMCD or MN, or other glomerulopathies, with some pediatric participants included without biopsy if meeting specific clinical criteria. Patients scheduled for clinically indicated kidney biopsies will be asked to consent to an additional biopsy sample for research. The study is observational and follows patients over time without providing experimental treatments. Throughout the study, participants undergo regular evaluations including kidney function and protein excretion measurements, quality of life assessments, and monitoring for serious health events such as infections, hospitalizations, and complications related to kidney disease. The primary outcomes focus on changes in urinary protein levels and kidney function over 60 months, with secondary outcomes tracking quality of life and other health events. Participants will be observed for up to several years to gather comprehensive data on disease progression and outcomes.

Nephrotic Syndrome Study Network