Abstract: INFO13-TH
The Nephrotic Syndrome Study Network: NEPTUNE
Session Information
- Informational Posters - 1
October 24, 2024 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- No subcategory defined
Author
- Kretzler, Matthias, 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 31 North American sites for conducting clinical and translational research on Focal and Segmental Glomerular Sclerosis (FSGS), Minimal Change Disease (MCD), and Membranous Nephropathy (MN). Adults and children with biopsy-proven FSGS, MCD, or MN are recruited at the time of biopsy. Participants provide a research biopsy core and are followed for 36 months. Children with incident NS without a diagnostic kidney biopsy are followed for up to 5 years. NEPTUNE recently expanded its scope to now include adults and children with Alport syndrome. All participants provide blood, urine, and clinical data at enrollment and at the 4-month visit and annually thereafter. 1049 consented and eligible participants have enrolled to-date. NEPTUNE’s newest study, Match, is designed to develop and test a mechanism for evidence-based clinical trial selection and communication aimed to match the highly heterogeneous NS patient population to clinical trials targeting specific mechanisms activated in their individual disease profiles.
The NEPTUNE Ancillary Studies Program facilitates use of consortium resources to the broad research community. Investigators can apply to obtain biosamples, kidney biopsy images, clinical data, patient-reported outcomes, and genetic and genomic datasets derived from biofluids and renal biopsy tissue. NEPTUNE resources have been utilized in more than 216 studies to date to define glomerular disease presentation, pathobiology and care deliver, see Neptune-study.org for easy access.
Funding
- NEPTUNE is part of the Rare Diseases Clinical Research Network (RDCRN), funded by the National Institutes of Health and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). NEPTUNE (U54DK083912) is funded under a collaboration between NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Additional funding and programmatic support are provided by NephCure Kidney International, the University of Michigan, the Alport Foundation, and the Halpin Foundation. The RDCRN Data Management and Coordinating Center supports RDCRN consortia and is funded by NCATS and the NINDS (U2CTR002818).