title: Design of the Nephrotic Syndrome Study Network (NEPTUNE) to evaluate primary glomerular nephropathy by a multidisciplinary approach.
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.
authors: Department of Medicine, Temple University, Philadelphia, Pennsylvania, USA.
authors: Crystal A
authors: CA
authors: Gadegbeku
authors: Debbie S
authors: DS
authors: Gipson
authors: Lawrence B
authors: LB
authors: Holzman
authors: Akinlolu O
authors: AO
authors: Ojo
authors: Peter X K
authors: PX
authors: Song
authors: Laura
authors: L
authors: Barisoni
authors: Matthew G
authors: MG
authors: Sampson
authors: Jeffrey B
authors: JB
authors: Kopp
authors: Kevin V
authors: KV
authors: Lemley
authors: Peter J
authors: PJ
authors: Nelson
authors: Chrysta C
authors: CC
authors: Lienczewski
authors: Sharon G
authors: SG
authors: Adler
authors: Gerald B
authors: GB
authors: Appel
authors: Daniel C
authors: DC
authors: Cattran
authors: Michael J
authors: MJ
authors: Choi
authors: Gabriel
authors: G
authors: Contreras
authors: Katherine M
authors: KM
authors: Dell
authors: Fernando C
authors: FC
authors: Fervenza
authors: Keisha L
authors: KL
authors: Gibson
authors: Larry A
authors: LA
authors: Greenbaum
authors: Joel D
authors: JD
authors: Hernandez
authors: Stephen M
authors: SM
authors: Hewitt
authors: Sangeeta R
authors: SR
authors: Hingorani
authors: Michelle
authors: M
authors: Hladunewich
authors: Marie C
authors: MC
authors: Hogan
authors: Susan L
authors: SL
authors: Hogan
authors: Frederick J
authors: FJ
authors: Kaskel
authors: John C
authors: JC
authors: Lieske
authors: Kevin E C
authors: KE
authors: Meyers
authors: Patrick H
authors: PH
authors: Nachman
authors: Cynthia C
authors: CC
authors: Nast
authors: Alicia M
authors: AM
authors: Neu
authors: Heather N
authors: HN
authors: Reich
authors: John R
authors: JR
authors: Sedor
authors: Christine B
authors: CB
authors: Sethna
authors: Howard
authors: H
authors: Trachtman
authors: Katherine R
authors: KR
authors: Tuttle
authors: Olga
authors: O
authors: Zhdanova
authors: Gastòn E
authors: GE
authors: Zilleruelo
authors: Matthias
authors: M
authors: Kretzler
mesh_terms: D000328:Adult; D000367:Age Factors; D001706:Biopsy; D002648:Child; D003299:Cooperative Behavior; D005838:Genotype; D005921:Glomerulonephritis / Q000453:epidemiology / Q000235:genetics / Q000473:pathology / Q000628:therapy; D015433:Glomerulonephritis, Membranous / Q000453:epidemiology / Q000235:genetics / Q000473:pathology / Q000628:therapy; D005923:Glomerulosclerosis, Focal Segmental / Q000453:epidemiology / Q000235:genetics / Q000473:pathology / Q000628:therapy; D006801:Humans; D008137:Longitudinal Studies; D009402:Nephrosis, Lipoid / Q000453:epidemiology / Q000235:genetics / Q000473:pathology / Q000628:therapy; D009404:Nephrotic Syndrome / Q000453:epidemiology / Q000235:genetics / Q000473:pathology / Q000628:therapy; D009656:North America / Q000453:epidemiology; D010641:Phenotype; D010865:Pilot Projects; D011237:Predictive Value of Tests; D011379:Prognosis; D011446:Prospective Studies; D012042:Registries; D012107:Research Design; D012307:Risk Factors; D011795:Surveys and Questionnaires; D049490:Systems Biology; D013997:Time Factors; D057170:Translational Research, Biomedical / Q000379:methods*