PubMed ID:
23325076
Public Release Type:
Journal
Publication Year: 2013
Affiliation: Department of Medicine, Temple University, Philadelphia, Pennsylvania, USA.
DOI:
https://doi.org/10.1038/ki.2012.428
Authors:
Appel GB,
Fervenza FC,
Adler SG,
Barisoni L,
Cattran DC,
Choi MJ,
Contreras G,
Dell KM,
Gadegbeku CA,
Gibson KL,
Gipson DS,
Greenbaum LA,
Hernandez JD,
Hewitt SM,
Hingorani SR,
Hladunewich M,
Hogan MC,
Hogan SL,
Holzman LB,
Kaskel FJ,
Kopp JB,
Kretzler M,
Lemley KV,
Lienczewski CC,
Lieske JC,
Meyers KE,
Nachman PH,
Nast CC,
Nelson PJ,
Neu AM,
Ojo AO,
Reich HN,
Sampson MG,
Sedor JR,
Sethna CB,
Song PX,
Trachtman H,
Tuttle KR,
Zhdanova O,
Zilleruelo GE
Studies:
Nephrotic Syndrome Study Network
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.