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Abstract: INFO17

Nephrotic Syndrome Study Network (NEPTUNE)

Session Information

  • Informational Posters
    October 25, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category:

  • No subcategory defined

Authors

  • Kretzler, Matthias, U.Michigan, Ann Arbor, Michigan, United States
  • Holzman, Lawrence B., University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Gadegbeku, Crystal A., Temple University, Philadelphia, Pennsylvania, United States
  • Gipson, Debbie S., University of Michigan Mott Children's Hospital, Ann Arbor, Michigan, United States
  • Sedor, John R., Cleveland Clinic, Cleveland, Ohio, United States

Group or Team Name

  • The NEPTUNE Consortium
Description

The Nephrotic Syndrome Study Network (NEPTUNE) is a collaborative, investigational infrastructure of 23 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 provides prospective, un-blinded, standardized evaluation of clinical and molecular outcomes in two cohorts: 1) adults and children with incident, biopsy-proven FSGS, MCD, or MN, recruited at the time of first biopsy, and 2) children with incident NS without a diagnostic kidney biopsy. Study participants provide a biopsy core at enrollment, plus biosamples (i.e., blood, urine) and clinical data at 4-6 month intervals for a minimum 36 months of follow-up. Data resources further encompass standardized digital histopathology scoring, morphometry, cytokine and chemokine panel in blood and urine, renal biopsy gene expression profiles and whole genome sequencing. Data and samples are made available to interested researchers through the Pilot and Ancillary Studies Program. Just over 100 studies utilizing NEPTUNE resources have been approved. The web-based tranSMART data interface provides an effective mechanism to conduct exploratory analyses with NEPTUNE data. Additional network activities include a patient contact registry for NS, with 1866 current registrants, and a training program in clinical and translational research in glomerular diseases for post-doctoral and junior faculty. NEPTUNE is a part of the National Institutes of Health RDCRN, supported by the Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), and the National Institute of Diabetes, Digestive, and Kidney Diseases (NIDDK). The University of Michigan, NephCure Kidney International and the Halpin Foundation provide additional funding and/or programmatic support. For further information to utilize NEPTUNE data and resources for your studies, see: <a href="http://www.neptune-study.org">http://www.neptune-study.org</a>.

Funding

  • The National Institute of Diabetes and Digestive and Kidney Diseases and The National Center for Advancing Translational Sciences