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Kidney Week

Abstract: INFO27

The Nephrotic Syndrome Study Network

Session Information

Category: Glomerular Diseases

  • No subcategory defined

Authors

  • Kretzler, Matthias, University of Michigan, Ann Arbor, Michigan, United States
  • Sedor, John R., Cleveland Clinic, Cleveland, Ohio, United States
  • Gipson, Debbie S., University of Michigan, Ann Arbor, Michigan, United States
  • Holzman, Lawrence B., Penn Medicine, Philadelphia, Pennsylvania, United States
  • Gadegbeku, Crystal A., Temple University, Philadelphia, Pennsylvania, United States
  • Mariani, Laura H., University of Michigan, Ann Arbor, Michigan, United States

Group or Team Name

  • NEPTUNE Consortium
Description

The Nephrotic Syndrome Study Network (NEPTUNE) is a collaborative, investigational infrastructure of 26 sites across North America for conducting clinical and translational research on Focal and Segmental Glomerular Sclerosis (FSGS), Minimal Change Disease (MCD), and Membranous Nephropathy (MN). NEPTUNE has two longitudinal cohorts: 1) adults and children with biopsy-proven FSGS, MCD, or MN, recruited at the time of biopsy and followed for 36 months, and 2) children with incident NS without a diagnostic kidney biopsy followed for up to 10 years. Participants in the Biopsy Cohort provide a biopsy core at enrollment, and both cohorts provide blood, urine, and clinical data at enrollment and at 4-6 month intervals. To-date, 852 participants have enrolled. NEPTUNE’s newest study, “Match,” is designed to develop and test a mechanism for evidence-based clinical trial selection and effective communication which can match the highly heterogeneous nephrotic syndrome patient population to clinical trials targeting the specific mechanisms activated in their disease.

NEPTUNE supports a Career Enhancement Program and a competitive fellowship and a Pilot/Ancillary Studies Program that makes consortium resources available to the broad research community. Investigators can apply to use biosamples, kidney biopsy whole-slide images, demographic and clinical data, patient-reported outcomes, and datasets derived from biosamples, such as cytokine and chemokine panels, renal biopsy gene expression profiles, whole genome sequencing, and targeted proteomics. The web-based tranSMART interface allows a broad research community to conduct exploratory analyses with NEPTUNE data.

NEPTUNE is part of the National Institutes of Health Rare Disease Clinical Research Network (RDCRN), supported through a collaboration between the National Center for Advancing Translational Sciences and the National Institute of Diabetes, Digestive, and Kidney Diseases. Additional funding and/or programmatic support is provided by the University of Michigan, the NephCure Kidney International and the Halpin Foundation. For further information, see: http://www.neptune-study.org.

Funding

  • NIDDK, NCATS