GOAL: The Nephrotic Syndrome Study Network (NEPTUNE) is a long-term observational study of patients with Minimal Change Disease (MCD), Focal Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN). By following these patients over an extended period of time, researchers hope to better understand the underlying causes of the Nephrotic Syndrome, how the diseases progress and how different treatments affect patient health.
WHO CAN PARTICIPATE: Patients who have protein in their urine may be eligible to be part of the NEPTUNE study. Adult and child patients are enrolled at the time of their kidney biopsies, and children who are recently diagnosed with nephrotic syndrome but who are not scheduled to have a kidney biopsy can also participate. Enrollment takes place at a NEPTUNE site (click here for the list). Currently, over 450 children and adults are a part of this study.
COMMITMENT: Patients spend some extra time at their normal nephrologist appointments to answer questions about their health and how they are feeling, and to donate blood, urine, and/or biopsy tissue. Patients participate for up to 36 months to help researchers achieve the goals of the study.
WHY IT IS IMPORTANT: By following patients with nephrotic syndrome over an extended period of time, researchers hope to better understand what causes nephrotic syndrome, how the diseases progress, and what treatments work best for different types of patients. Already, 58 studies have been approved to use NEPTUNE data and biosamples. These studies have advanced our understanding of NS and its related diseases. For one example, check out Dr. Thurman’s work here.