Enrollment has begun for a new multi-center patient registry, the Cure Glomerulonephropathy Network (CureGN), which will focus on patients with glomerular disease. The UNC Kidney Center is excited to announce its participation in this new endeavor to create a comprehensive registry that will allow for far-reaching and high impact studies for many years to come.
Researchers in the US, Canada, and Italy will study 2,400 children and adults with the following glomerular diseases: Minimal change disease (MCD), focal segmental glomerulosclerosis (FSGS), membranous nephropathy (MN), and IgA nephropathy (IGAN).
The UNC Kidney Center is one of four Primary Clinical Centers (PCC) leading the efforts of the project, and will begin enrollment in January. Each PCC will recruit 600 participants.
The UNC PCC is led by Primary Investigator Ron Falk, MD, Lead Co-Investigator Julie McGregor, MD and Lead Study Coordinator Caroline Poulton, MSW. As one of the PCCs, UNC also will oversee four sub sites: University of Alabama at Birmingham, Vanderbilt University, Virginia Commonwealth University, and Hôpital Maisonneuve-Rosemont/University of Montreal.
Study participants will be followed longitudinally, with collection of clinical data and biological specimens, to better understand the causes of disease, response to therapy, and disease progression. The goal of this registry is to provide an infrastructure to allow research that will ultimately cure glomerulonephropathy and answer the questions commonly asked by patients that we are still unable to adequately answer:.
“What is this disease?”
“Why do I have this disease?”
“What will happen to me?”
“What effective treatments can you offer me?”
This study is a first of its kind, due to the size and collaborative nature of the project. Current funding is for four years, but it is hoped that this registry will continue to collect data for decades and be the ultimate resource for research on patients with these diseases.
CureGN has been funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes for Health (NIH) and by NephCure Kidney International.