The objectives of NEPTUNE are to perform longitudinal observational studies on FSGS, Minimal Change Disease and Membranous patients within a collaborative, integrative, cost-effective infrastructure established through the 15 coordinating sites, and to collaborate with organizations including the Office of Rare Diseases Data Management Coordinating Center, NephCure and the Halpin Foundation to disseminate new knowledge to the public, physicians and researchers. A training program for physicians and researchers who aspire to do research in the field is also a part of the project.
UNC is one of 15 participating sites in the United States and Canada which will be conducting the research over the five years of the project. UNC’s Patrick Nachman, MD will lead as the Principal Investigator from this site, with Susan Hogan, PhD, as the leading Co-Investigator. J. Charles Jennette, MD, of UNC will participate as part of the study’s nephropathology team.
Matthias Kretzler, M.D., Principal Investigator for the study and Professor of Nephrology and the Center for Computational Medicine and Bioinformatics at the University of Michigan spoke about UNC’s participation.
“The UNC team has been instrumental in securing the funding of this unique opportunity to the field of glomerular research. The 25 years of experience gained in the Glomerular Disease Collaborative Network (GDCN) have been an invaluable asset for the design of NEPTUNE and we are looking forward to the leadership of the UNC team in our cohort studies.”
The foundation of the GDCN is the ongoing enrollment and follow-up of patients in sixteen specific glomerular disease registries, in order to identify patients at the onset of their disease and to follow the course of their disease throughout their life. The GDCN was co-founded in 1985 by Ronald Falk, MD and J. Charles Jennette, MD, who currently co-direct the network.
Kretzler noted the value that Dr. Jennette brings to this project.
“Having Dr. Jennette’s outstanding expertise in nephropathology available to the group will allow optimal integration of state of the art histopathology with the clinical and molecular data obtained from our patients,” said Kretzler.
The study is supported by a $6.25 million grant from the National Institutes of Health Office of Rare Diseases and the National Institutes of Diabetes, Digestive and Kidney Disease, a $2 million commitment from NephCure Foundation and a $2 million contribution from the University of Michigan. The NephCure Foundation supports research on the Nephrotic Syndrome and FSGS and provides educational resources for those seeking information about these conditions. Working in conjunction with the researchers and the NephCure Foundation, the Halpin Foundation will also provide support for the grant, particularly in helping to create and support a web-based environment with educational information for patients and the public. The Halpin Foundation has a particular interest in targeted research on membranous nephropathy.
“We hope that this integrative approach will help to unravel the mechanism responsible for these diseases and potentially develop new targeted treatment therapies," said Kretzler.
As researchers better understand these glomerular diseases, the ultimate goal is to better manage and treat them while keeping patients well informed of new discoveries.
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