Abstract: INFO10-SA
Nephrotic Syndrome Study Network (NEPTUNE)
Session Information
- Informational Posters - III
November 09, 2019 | Location: Exhibit Hall, Walter E. Washington Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- No subcategory defined
Authors
- Kretzler, Matthias, U.Michigan, Ann Arbor, Michigan, United States
- Sedor, John R., Cleveland Clinic, Cleveland, Ohio, United States
- Holzman, Lawrence B., University of Pennsylvania, Philadelphia, Pennsylvania, United States
- Gipson, Debbie S., University of Michigan Mott Children's Hospital, Ann Arbor, Michigan, United States
Group or Team Name
- NEPTUNE
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 provides prospective, un-blinded, standardized evaluation of clinical and molecular outcomes in two cohorts: 1) adults and children with biopsy-proven FSGS, MCD, or MN, recruited at the time biopsy, and 2) children with new-onset nephrotic syndrome diagnosed but a kidney biopsy has not been performed. Study participants provide a biopsy core at enrollment (for Biopsy Cohort), plus biosamples (i.e., blood, urine) and clinical data at 4-6 month intervals for a minimum 36 months of follow-up. The NEPTUNE Digital Pathology Repository provides an innovative repository of kidney biopsy whole slide images (WSI), with protocols for manual annotation/enumeration of kidney structures and a standardized, quantitative scoring system for agnostic kidney biopsy assessment. Data resources further encompass cytokine and chemokine panel in blood and urine, renal biopsy gene expression profiles, whole genome sequencing, targeted proteomics, and census tract data. In aggregate, NEPTUNE has enrolled 796 participants, with biosamples and associated detailed clinical and histological data. Data and samples are made available to interested researchers through the Pilot and Ancillary Studies Program. To date, NEPTUNE has approved 140 ancillary studies ranging from methods development to Phase II clinical trials. The web-based tranSMART data interface provides an effective mechanism to conduct exploratory analyses with NEPTUNE data. In addition, NEPTUNE supports a training program in clinical and translational research in glomerular diseases for post-doctoral and junior faculty. 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