Nephrotic Syndrome Rare Disease Clinical Research Network III (NEPTUNE)

Focal and Segmental Glomerulosclerosis, Minimal Change Disease, and Membranous Nephropathy, presenting as Nephrotic Syndrome (NS), are a group of rare renal diseases that may cause serious complications and end-stage kidney disease, generating significant individual, societal and economic burdens. The Nephrotic Syndrome Study Network (NEPTUNE) brings together physician scientists at 26 sites in the United States and Canada along with patient advocacy groups to advance research on these diseases. We have captured detailed clinical, histological, genetic, transcriptomic, and proteomic data sets for more than 750 rigorously phenotyped study participants in our rich translational and clinical research infrastructure. Using a systems biology and precision medicine approach, NEPTUNE is working to define NS in molecular terms, identify novel therapeutic targets, and test strategies to match patients with treatments in ongoing clinical trials. NEPTUNE recruits adult and pediatric participants who are undergoing a kidney biopsy for clinical care. Additionally, for patients under the age of 19, there is a cohort that does not require a biopsy for study eligibility. Both groups are followed longitudinally and biospecimens are collected at study visits, including tissue (at biopsy only), blood, and urine.

The Nephrotic Syndrome Study Network (NEPTUNE) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). NEPTUNE is funded under grant number U54DK083912 as a collaboration between NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). All RDCRN consortia are supported by the network’s Data Management and Coordinating Center (DMCC) (U2CTR002818). Funding support for the DMCC is provided by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS).