Abstract: INFO17-FR
The Nephrotic Syndrome Study Network (NEPTUNE)
Session Information
- Informational Posters - 2
October 23, 2026 | Location: Exhibit Hall A, 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
- Consortium, Neptune, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
- Lienczewski, Chrysta C., University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
Description
The Nephrotic Syndrome Study Network (NEPTUNE) is a collaborative, investigational infrastructure of 40 North American sites to conduct clinical and translational research on Focal and Segmental Glomerular Sclerosis (FSGS), Minimal Change Disease (MCD), Membranous Nephropathy (MN), Alport Syndrome (AS), and pediatric onset nephrotic syndrome (NS). There are two enrollment pathways. (1) Adults and children with suspected FSGS, MCD, or MN are recruited at time of biopsy, consent to collection of a research biopsy core and are followed for 36 months. Children with incident NS and individuals with a clinical diagnosis of AS are also enrolled and similarly followed. All participants provide blood, urine, and clinical data at enrollment and annually thereafter, with interim 6-month phone visits. 1186 consented and eligible participants enrolled to-date. (2) Participants with prior confirmation of any of these diagnoses are enrolled in a precision medicine trial-ready cohort. Participants provide biospecimens at baseline and subsequently are followed via a mobile health application as the primary engagement tool in support of the NEPTUNE Match program.
NEPTUNE Match is a sub-study to NEPTUNE which is designed to develop and test a mechanism for evidence-based clinical trial selection and communication. The aims are to match the highly heterogeneous NS patient population to partnering clinical trials that target mechanisms activated in participant-specific NS disease profiles. Participants are recruited from the primary NEPTUNE study and receive their matching results in a structured way, for independent decision making.
The NEPTUNE Ancillary Studies Program facilitates use of consortium resources to the broad research community. Investigators can apply for use of 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 291 studies to date to define glomerular disease presentation, pathobiology and care delivery. www.neptune-study.org for easy access and additional resources.
Acknowledgment
NEPTUNE is Rare Diseases Clinical Research Network (RDCRN) alumnus, which is funded by NIH and led by NCATS through its DRDRI. NEPTUNE has been funded under grant number U54DK083912 as a collaboration between NCATS and NIDDK. Additional funding and/or programmatic support is provided by U of Michigan, NephCure Kidney Int'l, Alport Syndrome & Halpin Foundations. RDCRN active consortia & alumni are supported by the RDCRN DMCC, funded by NCATS and NINDS under U2CTR002818.
Funding
- The National Institutes of Health, The University of Michigan, NephCure Kidney International, Alport Syndrome Foundation and Halpin Foundation