Design of the nephrotic syndrome study network (NEPTUNE) to evaluate primary glomerular nephropathy by a multidisciplinary approach

Crystal A. Gadegbeku, Debbie S. Gipson, Lawrence B. Holzman, Akinlolu O. Ojo, Peter X.K. Song, Laura Barisoni, Matthew G. Sampson, Jeffrey B. Kopp, Kevin V. Lemley, Peter J. Nelson, Chrysta C. Lienczewski, Sharon G. Adler, Gerald B. Appel, Daniel C. Cattran, Michael J. Choi, Gabriel Contreras, Katherine M. Dell, Fernando C. Fervenza, Keisha L. Gibson, Larry A. GreenbaumJoel D. Hernandez, Stephen M. Hewitt, Sangeeta R. Hingorani, Michelle Hladunewich, Marie C. Hogan, Susan L. Hogan, Frederick J. Kaskel, John C. Lieske, Kevin E.C. Meyers, Patrick H. Nachman, Cynthia C. Nast, Alicia M. Neu, Heather N. Reich, John R. Sedor, Christine B. Sethna, Howard Trachtman, Katherine R. Tuttle, Olga Zhdanova, Gastòn E. Zilleruelo, Matthias Kretzler

Research output: Contribution to journalArticlepeer-review

156 Scopus citations

Abstract

The Nephrotic Syndrome Study Network (NEPTUNE) is a North American multicenter collaborative consortium established to develop a translational research infrastructure for nephrotic syndrome. This includes a longitudinal observational cohort study, a pilot and ancillary study program, a training program, and a patient contact registry. NEPTUNE will enroll 450 adults and children with minimal change disease, focal segmental glomerulosclerosis, and membranous nephropathy for detailed clinical, histopathological, and molecular phenotyping at the time of clinically indicated renal biopsy. Initial visits will include an extensive clinical history, physical examination, collection of urine, blood and renal tissue samples, and assessments of quality of life and patient-reported outcomes. Follow-up history, physical measures, urine and blood samples, and questionnaires will be obtained every 4 months in the first year and biannually, thereafter. Molecular profiles and gene expression data will be linked to phenotypic, genetic, and digitalized histological data for comprehensive analyses using systems biology approaches. Analytical strategies were designed to transform descriptive information to mechanistic disease classification for nephrotic syndrome and to identify clinical, histological, and genomic disease predictors. Thus, understanding the complexity of the disease pathogenesis will guide further investigation for targeted therapeutic strategies.

Original languageEnglish (US)
Pages (from-to)749-756
Number of pages8
JournalKidney international
Volume83
Issue number4
DOIs
StatePublished - Apr 2013
Externally publishedYes

Bibliographical note

Funding Information:
To facilitate studies of this type, the Nephrotic Syndrome Study Network (NEPTUNE), supported by the National Institutes of Diabetes and Digestive and Kidney Disease (NIDDK), the Office for Rare Diseases Research (ORDR) at the National Institutes of Health (NIH), and The NephCure and Halpin Foundations, was designed to conduct multidisciplinary innovative research to address the ‘translational gap,’ which is a barrier to successful management of adults and children with FSGS, MCD, and MN.

Funding Information:
NEPTUNE is a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by U54 DK083912 from the Office of Rare Diseases Research (ORDR)/NCATS, NIDDK, the NephCure Foundation, and the University of Michigan. The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services, nor does the mention by trade names, commercial practices, or organizations imply endorsement by the US Government. We thank D. Taylor-Moon for assistance in manuscript preparation.

Keywords

  • clinical trial
  • focal segmental glomerulosclerosis
  • membranous nephropathy
  • nephrotic syndrome

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