The Columbia PCC for CureGN: the Cure Glomerulonephropathy network

Abstract Primary glomerular diseases, including minimal change disease (MCD), focal segmental glomerulosclerosis (FSGS), immunoglobulin A nephropathy (IgAN), and membranous nephropathy (MN), are associated with significant morbidity and mortality in both adults and children. The Cure Glomerulonephropathy (CureGN) study launched in 2013 to address critical knowledge gaps in the disease pathogenesis, natural history, and response to therapy of these heterogeneous disorders. It is a study of unprecedented size and remarkable depth, built by a unique, collaborative, interdisciplinary community. The international consortium includes researchers with diverse expertise, affected patients and advocacy groups, the biopharmaceutical industry, and federal funding agencies. CureGN has successfully recruited a diverse cohort of nearly 2800 adult and pediatric participants with MCD, FSGS, IgAN, and MN from more than 60 clinical study sites into a prospective, longitudinal, observational cohort study. Biospecimens, clinical data, and patient-reported outcomes are collected to enable high-quality clinical, mechanistic, and translational investigations. This foundational work is being conducted by a well-functioning collaborative group including the Data Coordinating Center (at the University of Michigan, Northwestern University, and Cleveland Clinic) and four Participating Clinical Centers (managed at the University of Pennsylvania, Columbia University, University of North Carolina, and the Pediatric Nephrology Research Consortium). CureGN will pave the way for personalized care in glomerular disease by disentangling the heterogeneity of disorders that are etiologically diverse but currently grouped into only four diagnoses. In CureGN’s third study phase, we propose to maintain and enhance the CureGN Consortium infrastructure and ancillary study program to accelerate patient-relevant glomerular disease research. We will continue our core observational study, enrolling additional participants in a recruit-to-replace strategy to maintain an active cohort of 2000 participants with high-quality clinical data and biomaterials. We will implement state-of-the-art data collection tools including remote data and biospecimen collection, new biospecimen types, and use of mobile devices for patient-facing engagement and medical record linkages. Mature scientific working groups, committees and ancillary infrastructure will continue to support a multidisciplinary core and ancillary study program to achieve the scientific goals of CureGN. We will continue outreach to the scientific community by expanding CureGN’s role as an outstanding training vehicle for the next generation of glomerular disease researchers and attracting cutting-edge, established scientists to glomerular disease through opportunity pool grants, collaborations with patient advocacy groups and professional societies, training workshops, and support of ancillary studies from academic and industry partners. Through this coordinated effort, CureGN is prepared to accelerate the improvement care of glomerular disease patients.