Abstract: INFO13-SA
The Nephrotic Syndrome Study Network (NEPTUNE)
Session Information
- Informational Posters - III
November 04, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
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., University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, United States
- Gadegbeku, Crystal A., Cleveland Clinic, Cleveland, Ohio, United States
- Trachtman, Howard, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
- Mariani, Laura H., University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
- Modi, Zubin J., University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
- Fornoni, Alessia, University of Miami School of Medicine, Miami, Florida, United States
- Rheault, Michelle N., University of Minnesota Twin Cities School of Medicine, Minneapolis, Minnesota, United States
Group or Team Name
- The Nephrotic Syndrome Study Network
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 10 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. 969 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 disease.
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 datasets derived from biosamples. The web-based tranSMART interface provides opportunity for exploratory analyses with NEPTUNE data. NEPTUNE integrates a 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 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).
Funding
- National Center for Advancing Translational Sciences (NCATS) National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)