cNEPTUNE (The Nephrotic Syndrome Study Network for Children)

Principal Investigator: Patrick Nachman, MD and Keisha Gibson, MD
Sponsors: National Institutes of Health, NIDDK, NephCure Kidney International, University of Michigan
Age Range: Children less than 19 years old
Status: Ongoing – enrollment open

Purpose: To better understand new-onset Nephrotic Syndrome in children, by studying the course of the disease and therapeutic options, from the presentation of the illness through the  collection of molecular, genetic, clinical and patient data. Ultimately to design better diagnostic and therapeutic solutions for this disease. Children less than 19 years of age who present with new-onset nephrotic syndrome and proteinuria or albuminuria may qualify for the study. 

Study Procedures: During study visits, information will be collected, surveys will be administered, and blood and urine samples will be collected.  Families will also be asked to monitor urine proteinuria by dipstick every morning for 3 months and report results and disease status via a pre-determined text messaging system. If a subject should require a biopsy for diagnostic purposes, the family will be asked to consent to allow for an additional biopsy sample to be obtained for the study.

Participation: Participation will last for 3 years. There will be 4 study visits in the first year, 2 visits in years two and three and potentially 1 relapse visit per year. There will be one phone call visit the first year.

For more information, please contact:

Sandy Grubbs
919-445-2658

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