At a glance
ClinicalIndex Comparison Record- ✓Enrolled in NEPTUNE observational study (biopsied or non-biopsied cohorts)
- ✓Potentially eligible for specific NEPTUNE Match partnering trial
- ✓Receives regular nephrology care at NEPTUNE study site
- ✓Able to provide informed consent/assent
- ✕Not enrolled in NEPTUNE observational study
- ✕Non-English or non-Spanish speaking
Standardized by ClinicalIndex from the ClinicalTrials.gov record · verify against the source.
Implementing Precision Medicine for Glomerular Diseases in the Nephrotic Syndrome Study Network (NEPTUNE)
In Brief
A clinical study evaluating Communication for Nephrotic Syndrome in Children and 8 related conditions. Currently recruiting, targeting 375 participants across 16 sites.
Signals
Detailed Summary
NEPTUNE Match is an additional opportunity offered to NEPTUNE study participants to prospectively recruit and communicate patient-specific clinical trial matching with kidney patients and their physician investigators.
Study Details
Timeline
Arms & Interventions
Approximately 375 participants will be consented from the NEPTUNE observational study with age and demographic groups representing the patient population in the NEPTUNE study site geographical areas. NEPTUNE observational cohort eligibility includes: participants in NEPTUNE observational cohort A are of any age and have a biopsy-confirmed diagnosis of Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), or Membranous Nephropathy (MN). Participants in NEPTUNE observational cohort B have documented NS based on proteinuria, serum albumin, and/or edema with age of onset less than 19 years.
Interventions
The NEPTUNE Match study includes an interdisciplinary Communication Team that will translate findings from the Molecular Nephrology Board (MNB) to inform patients of the matching assessment with ongoing clinical trials. This team has considerable experience with conveying complex biomedical research information to patients and families and includes experts in precision nephrology, nephrology patient \[adult and pediatric\] communication, and health education.