The Nephrotic Syndrome Study Network (NEPTUNE) aims to define Nephrotic Syndrome (NS) in functional terms to identify novel molecular predictors and targeted therapies. The network provides prospective, un-blinded, standardized evaluation of clinical and molecular outcomes in two cohorts: Biopsy Cohort, and the Pediatric Non-Biopsy Cohort ("cNEPTUNE").
More specifically, the two parallel cohorts of study participants are:
1) Adults and children with FSGS, MCD, or MN recruited at the time of first biopsy; and
2) Children with NS recruited at the time of first presentation before diagnostic kidney biopsy.
The first cohort began with the initiation of NEPTUNE in 2010; the latter cohort was added with the second funding cycle of NEPTUNE. With the addition of second cohort to NEPTUNE, we have a unique opportunity to study patients from the onset of disease, allowing not just the collection of data, but valuable biosamples that have not been affected by time or medications.
Study participants for both cohorts provide biosamples and clinical data at 4-6 month intervals for a minimum 36 months of follow-up. Study Participants in the non-biopsy cohort additionally receive daily text messages for the first 90 days that they are in the study, and then weekly text messages for the first year. Participants are asked about proteinuria, edema, potential triggers, as well as time missed from school or work due to NS to capture the dynamic nature of the disease process.