Renewal of Advancing Clinical Research in Primary Glomerular Disease (Cure GN)
May 2022 Council
Point(s) of Contact
Cindy Roy, Ph.D., Afshin Parsa, M.D., M.P.H.
The purpose of this initiative is to support observational and translational research to better understand the natural history of the primary glomerulopathies (GNs) in a range of adult and pediatric individuals; understand clinical and molecular factors associated with varied outcomes; and to provide a platform for further study of GNs via ancillary studies that harness data and biosample collections for discovery of underlying causes and treatment targets. Primary aims are: 1) Recruit and maintain an observational multiethnic cohort with biopsy-documented IgAN, FSGS, MN, or MCD; 2) Characterize clinical, histological, molecular, and genetic biomarkers; 3) Define long term disease trajectories and predictors of outcomes in children and adults; and 4) Integrate multiple CureGN data domains to uncover novel disease features and delineate pathophysiologic pathways for more precise disease characterization, diagnosis, prognosis, and treatment strategies. The study OSMB has been satisfied with the progress of the consortium and suggested taking action to promote retention and capture of long term outcomes. Continued support will be essential to allow for sufficient follow up of the enrolled participants; to adequately observe and capture the slowly progressive remitting and relapsing nature of these rare diseases; to identify disease subgroups; and to capture sufficient numbers of events to understand divergent clinical outcomes.