TY - JOUR
T1 - Design of the nephrotic syndrome study network (NEPTUNE) to evaluate primary glomerular nephropathy by a multidisciplinary approach
AU - Gadegbeku, Crystal A.
AU - Gipson, Debbie S.
AU - Holzman, Lawrence B.
AU - Ojo, Akinlolu O.
AU - Song, Peter X.K.
AU - Barisoni, Laura
AU - Sampson, Matthew G.
AU - Kopp, Jeffrey B.
AU - Lemley, Kevin V.
AU - Nelson, Peter J.
AU - Lienczewski, Chrysta C.
AU - Adler, Sharon G.
AU - Appel, Gerald B.
AU - Cattran, Daniel C.
AU - Choi, Michael J.
AU - Contreras, Gabriel
AU - Dell, Katherine M.
AU - Fervenza, Fernando C.
AU - Gibson, Keisha L.
AU - Greenbaum, Larry A.
AU - Hernandez, Joel D.
AU - Hewitt, Stephen M.
AU - Hingorani, Sangeeta R.
AU - Hladunewich, Michelle
AU - Hogan, Marie C.
AU - Hogan, Susan L.
AU - Kaskel, Frederick J.
AU - Lieske, John C.
AU - Meyers, Kevin E.C.
AU - Nachman, Patrick H.
AU - Nast, Cynthia C.
AU - Neu, Alicia M.
AU - Reich, Heather N.
AU - Sedor, John R.
AU - Sethna, Christine B.
AU - Trachtman, Howard
AU - Tuttle, Katherine R.
AU - Zhdanova, Olga
AU - Zilleruelo, Gastòn E.
AU - Kretzler, Matthias
PY - 2013/4
Y1 - 2013/4
N2 - 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.
AB - 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.
KW - clinical trial
KW - focal segmental glomerulosclerosis
KW - membranous nephropathy
KW - nephrotic syndrome
UR - http://www.scopus.com/inward/record.url?scp=84875701332&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84875701332&partnerID=8YFLogxK
U2 - 10.1038/ki.2012.428
DO - 10.1038/ki.2012.428
M3 - Article
C2 - 23325076
AN - SCOPUS:84875701332
VL - 83
SP - 749
EP - 756
JO - Kidney International
JF - Kidney International
SN - 0085-2538
IS - 4
ER -