Nephrotic Syndrome Study Network

Atrium Health Levine Children’s, Charlotte, NC

Baylor – Texas Children’s, Houston, TX�Children’s Mercy Hospital, Kansas City, MO

Cleveland Clinic, Cleveland, OH

Cohen Children’s Medical Center, New Hyde Park, NY

Columbia University, New York, NY

Duke University Medical Center, Raleigh, NC

Emory University, Atlanta, GA

John H. Stroger, Jr. Hospital of Cook County, Chicago, IL

Johns Hopkins Medical Institute, Baltimore, MD

Lundquist Institute for Biomedical Innovation, Torrance, CA

Medical Center of South Carolina, Charleston, SC

Montefiore Medical Center, Bronx, NY

New York University School of Medicine, New York, NY

Ohio State University Medical Center, Columbus, OH

Stanford University, Stanford, CA

Temple University, Philadelphia, PA

The Mayo Clinic, Rochester, MN

University Health Network, Toronto, Ontario, Canada

University of California at San Francisco, San Francisco, CA

University of Colorado, Anschutz Medical Campus, Aurora, CO

University of Kansas Medical Center, Kansas City, KS

University of Miami Medical Center, Miami, FL

University of Michigan, Ann Arbor, MI

University of Minnesota, Minneapolis, MN

University of North Carolina at Chapel Hill, Chapel Hill, NC

University of Pennsylvania, Philadelphia, PA

University of Southern California, Children’s Hospital of LA, CA

University of Texas at San Antonio, San Antonio, TX

University of Texas Southwest Medical Center, Dallas, TX

University of Washington, Seattle, WA

Wake Forest, Winston-Salem, NC

Washington University, St. Louis, MO��RDCRN III DMCC – Cincinnati Children’s Hospital, Cincinnati, OH�NEPTUNE DACC – University of Michigan, Ann Arbor, MI

NEPTUNE is a collaborative, investigational infrastructure of 34 North American sites for conducting clinical and translational research on:

Overarching goal: Precision medicine for nephrotic syndrome

• Focal Segmental Glomerulosclerosis (FSGS)
• Minimal Change Disease (MCD)
• Membranous Nephropathy (MN)

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• Pediatric Non-biopsy Cohort
• Alport Syndrome

Identifying the right trial for the right patient at the right time in nephrotic syndrome.

• Recruit and maintain follow-up into two NEPTUNE longitudinal cohorts with Nephrotic Syndrome (NS)
• Identify activated molecular pathways in individual NS patients and match them with clinical trials that target the candidate mechanisms
• Support an Ancillary Studies Program that facilitates glomerular diseases research
• Train the next generation of glomerular disease investigators

Goals

Longitudinal Cohorts

Biopsy: �Adults & children with FSGS, MCD, MN recruited at time of biopsy

Non-Biopsy: �Children with NS recruited at first presentation before diagnostic biopsy

Alport syndrome: �Adults & children with COL4 variants, family history, or hearing loss; may be recruited at time of biopsy

Match Cohort (Cohort M): �Adults & children that had a prior confirmatory biopsy indicating FSGS, MCD, MN, or non-biopsied childhood nephrotic syndrome that meet NEPTUNE Match dynamic criteria and have an interest in Match enrollment.

NEPTUNE Match

Right Trial for the Right Patient at the Right Time

NEPTUNE Match Study Flow

Match individual patient’s molecular disease mechanism with pathways targeted in independent, ongoing nephrotic syndrome clinical trials.

Deep Clinical & Molecular Phenotyping

Prospective cohort studies

Multiscalar Data Integration

Clinical Phenotype

Histology

Genome

Transcriptome

Proteome

Metabolome

Patient-level Pathway Activity

Non-invasive surrogate markers

Patient profiling

Targeted therapies

Use the observational clinical data, histopathology data, biosamples, and derived data sets from NEPTUNE patients for your own research. Open to all qualified scientists.

Ancillary Studies Program

NKI-NEPTUNE Pilot Program

NephCure Kidney International (NKI) supports a competitive research grant program dedicated specifically to funding NEPTUNE-related pilot studies.

See NEPTUNE-STUDY.org for information and opportunities!

Career Enhancement Program

Designed to attract trainees and junior researchers to the field of glomerular disease and support their career goals. A variety of opportunities provided including a seminar series, support for other career development awards, participating in NEPTUNE and CureGN committees and workgroups, and networking.

Program provides fellowship awards.

Shared data ontologies, harmonized sample procurement protocol, and common data mining tools (tranSMART)

Collaboration with Networks Globally

NEPTUNE tranSMART

NEPTUNE tranSMART archives the study’s clinical, biospecimen, and biomarker data in an easy-to-use web-based platform

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General Information for Your Participants

NEPTUNE Patient Advisory Council for Therapies�

NPACT

Printable information sheets available in English:

• Nephrotic Syndrome, FSGS, MCD, MN
• 24 Hour and Timed Urine
• Personalized Medicine and Biomarkers�

Printable brochures for FSGS, MCD, and MN available in English and Spanish�

A participant advisory panel consisting of patients and parents of children with NS with a primary goal of enhancing NS research success by developing effective patient and caregiver-focused research engagement tools and strategies.�

Available on our website: NEPTUNE-STUDY.org

Learn More

Gadegbeku CA, Gipson DS, Holzman LB, et al. Design of the Nephrotic Syndrome Study Network (NEPTUNE) to evaluate primary glomerular nephropathy by a multi-disciplinary approach. Kidney international. 2013;83(4):749-756. doi:10.1038/ki.2012.428. PMID: 23325076 PMCID: PMC3612359.

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Barisoni L, Nast CC, Jennette JC, et al. Digital Pathology Evaluation in the Multicenter Nephrotic Syndrome Study Network (NEPTUNE). Clin J Am Soc Nephrol. 2013;8:1449-1459. PMID: 23393107. PMCID: PMC3731905.

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Ju W, Nair V, Smith S, Zhu L, et al. Tissue transcriptome-driven identification of epidermal growth factor as a chronic kidney disease biomarker. Sci Transl Med. 7(316), 2015, DOI: 10.1126; PMID: 26631632; PMCID: PMC4861144.

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Troost JP, Trachtman H, Nachman P, et al. An outcomes-based definition of proteinuria remission in focal segmental glomerulosclerosis. Clin J Am Soc Nephrol. 2017 Nov 22. pii: CJN.04780517. doi: 10.2215/CJN.04780517. [Epub ahead of print]; PMID: 29167190 PMCID: PMC5967666

See NEPTUNE-STUDY.org for list of all NEPTUNE Publications

The Nephrotic Syndrome Study Network (NEPTUNE) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). NEPTUNE is funded under grant number U54DK083912 as a collaboration between NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Additional funding and/or programmatic support is provided by the University of Michigan, NephCure Kidney International and the Halpin Foundation. RDCRN consortia are supported by the RDCRN Data Management and Coordinating Center (DMCC), funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under U2CTR002818.

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Acknowledgment