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Kidney Week

Abstract: INFO33

The Nephrotic Syndrome Study Network

Session Information

  • Informational Posters
    November 04, 2021 | Location: On-Demand, Virtual Only
    Abstract Time: 10:00 AM - 12:00 PM

Category: Glomerular Diseases

  • No subcategory defined

Authors

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

Group or Team Name

  • Nephrotic Syndrome Study Network
Description

The Nephrotic Syndrome Study Network (NEPTUNE) is a collaboration of 26 North American sites conducting clinical and translational research on Focal and Segmental Glomerular Sclerosis (FSGS), Minimal Change Disease (MCD), and Membranous Nephropathy (MN). NEPTUNE maintains two longitudinal cohorts: 1) adults and children with biopsy-proven FSGS, MCD, or MN, recruited at biopsy and followed for 36 months, and 2) children with incident nephrotic syndrome (NS) without a diagnostic kidney biopsy followed for 10 years. Biopsy cohort provides a research biopsy core at enrollment, and both cohorts provide blood, urine, and clinical data at enrollment, 4-month, and annual visits. 885 consented and eligible participants have enrolled to-date. NEPTUNE’s newest study, Match, aims to develop and test a mechanism for evidence-based clinical trial selection and effective communication to match a highly heterogeneous NS population to clinical trials targeting the specific mechanisms activated in their disease.

NEPTUNE’s Ancillary Studies Program (ASP) leverages its datasets, biosamples, and whole slide images for use by a broad research community. Datasets include deep clinical phenotyping, whole genome sequencing, kidney biopsy RNAseq and snRNAseq, targeted plasma and urine proteomic data, histologic descriptors on WSI, and more. The tranSMART platform permits web-based exploratory analyses with NEPTUNE data. The NephCure Kidney International (NKI) Pilot Project Program is a special component of the NEPTUNE ASP that provides extramural funding dedicated specifically to funding NEPTUNE-related pilot studies. Further, NEPTUNE integrates a dynamic Career Enhancement Program and a competitive fellowship to attract promising scientists to research in rare diseases.

NEPTUNE is part of the Rare Diseases Clinical Research Network (RDCRN), 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 (U54DK083912) is funded by a collaboration between NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The University of Michigan, NKI and the Halpin Foundation provide additional funding and/or programmatic support. For more information, see: http://www.neptune-study.org.

Funding

  • NCATS and NIDDK