For three decades we have been recruiting and retaining patients with glomerular diseases into inception cohorts in which patients, by signing informed consent, agree to be followed from the time of their disease diagnosis until they die. These inception cohorts currently include over 3,300 patients, and almost 2,000 patients with the four diseases of interest to this consortium: minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy and IgA nephropathy. Our success at recruiting and retaining patients has relied upon our Glomerular Disease Collaborative Network (GDCN). The GDCN is a partnership between the University of North Carolina (UNC) and over 600 private practice nephrologists created for the purpose of conducting research. We now have over 28 years of experience in building inception cohorts, and making use of them in advancing research by participating in single- and multi-center translational, observational, quality-of-life and therapeutic intervention studies. We propose to participate in the this RFA Advancing Clinical Research in Primary Glomerular Diseases as an expanded GDCN Clinical Center based on the existing UNC GDCN in collaboration with the University of Alabama at Birmingham (UAB) and with most of the hospitals in Montreal, Canada that have formed their own glomerular disease registry. Our colleagues at Vanderbilt University and Virginia Commonwealth University will join the GDCN Clinical Center once the cohorts begin recruiting. We have included in our Center the Duke University David Murdock Registry of 9,000 healthy individuals and thus we have ready access to clinical information and banked bio samples for over 600 healthy subjects. The GDCN Clinical Center will cover much of the geography of the Southeastern portion of the United States and most institutions in Quebec province. Moreover, the institutions within the GDCN Clinical Center, which have demonstrated prowess in clinical and translational research, are proposing, and will propose, an array of translational science, observational and treatment protocols pertaining to each of the glomerular diseases of interest. The GDCN Clinical Center is more than ready to participate in the organizational and scientific collaborative efforts of this proposed multicenter consortium.
Patients with rare kidney diseases requiring diagnosis by a renal biopsy will be followed over their lifetime for this study (minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy and IgA nephropathy). This study will enroll and follow 2,400 patients from many different research centers. This will set the stage for research that will make much needed inroads into the understanding of the biology of these diseases and improve clinical care and Patient outcomes.
| Mariani, Laura H; Bomback, Andrew S; Canetta, Pietro A et al. (2018) CureGN Study Rationale, Design, and Methods: Establishing a Large Prospective Observational Study of Glomerular Disease. Am J Kidney Dis : |
| Selewski, David T; Ambruzs, Josephine M; Appel, Gerald B et al. (2018) Clinical Characteristics and Treatment Patterns of Children and Adults With IgA Nephropathy or IgA Vasculitis: Findings From the CureGN Study. Kidney Int Rep 3:1373-1384 |
