Nephrotic Syndrome Study Network (NEPTUNE)

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At a Glance
  • Status: Active Consortium
  • Year Launched: 2010
  • Initiating Organization: NIH Rare Disease Clinical Research Network
  • Initiator Type: Government
  • Rare disease
  • Disease focus:
    Focal And Segmental Glomerulosclerosis, Membranous Nephropathy, Minimal Change Disease
  • Location: International

Abstract

The Nephrotic Syndrome Study Network (NEPTUNE) is an integrated group of academic medical centers, patient support organizations (the NephCure Foundation and the Halpin Foundation), and clinical research resources dedicated to advancing the understanding and treatment of minimal change disease, focal and segmental glomerulosclerosis, and membranous nephropathy.

Mission

NEPTUNE brings together physician scientists at 22 research consortia in the United States and Canada, along with the patient advocacy groups, NephCure Kidney International and the Halpin Foundation, to advance research on the diseases that define nephrotic syndrome (NS). Already, NEPTUNE has collected biological material and detailed clinical data from more than 450 NS research participants and has supported pilot and ancillary studies utilizing the NEPTUNE data resources.

Structure & Governance

This consortium is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS). The RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

Funding and scientific oversight for the RDCRN are provided by NCATS and 10 NIH components: Eunice Kennedy Shriver National Institute of Child Health and Human Development; National Cancer Institute; the National Heart, Lung and Blood Institute; National Institute of Allergy and Infectious Diseases;  National Institute of Arthritis and Musculoskeletal and Skin Diseases; National Institute of Dental and Craniofacial Research; National Institute of Diabetes and Digestive and Kidney Diseases; National Institute of Mental Health; National Institute of Neurological Disorders and Stroke; and Office of the Director. In addition, patient advocacy groups provide funds for many of the projects.

Financing

Now in the second five-year funding cycle, NEPTUNE continues to recruit more research participants as well as to support training and research programs for scientists and clinicians.

Patient Engagement

The RDCRN NEPTUNE Contact Registry is a way for patients with NS and their family members to learn about NEPTUNE research studies that they may be able to join. Participation is completely voluntary, and participants can withdraw at any time. There is no cost to join the Contact Registry.

Points of Contact

Chrysta Lienczewski
Clinical Research Project Manager
Division of Nephrology
University of Michigan
206 Simpson Memorial Institute
102 Observatory
Ann Arbor, MI 48109
phone: 734-615-5021
fax: 734-615-6005

Sponsors & Partners

Case Western Reserve University

Children’s Hospital Los Angeles

Cohen Children’s Hospital New Hyde Park

Columbia University

Emory University/Children’s Healthcare of Atlanta

Harbor-UCLA Medical Center

John H. Stroger, Jr., Cook County Hospital

Mayo Clinic, Rochester

Montefiore Medical Center

National Institute of Diabetes and Digestive and Kidney Diseases

New York University

Stanford University

Temple University

The Johns Hopkins University School of Medicine, Baltimore

University Health Network, Toronto

University of Miami Miller School of Medicine, Coral Gables

University of Michigan, Ann Arbor

University of North Carolina, Chapel Hill

University of Pennsylvania

University of Texas Southwestern

University of Washington

Last Updated: 04/08/2016
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