Precision Medicine Communication Study for Kidney Patients with Nephrotic Syndrome and Glomerular Diseases Using the NEPTUNE Match Approach

What this Trial Is About

Researchers are evaluating a precision medicine approach for patients with nephrotic syndrome and related glomerular diseases through the NEPTUNE Match study. This study aims to improve communication between kidney patients and their physicians about clinical trial options that match the patients specific disease profile. The study involves participants from the NEPTUNE observational cohort, including those with biopsy-confirmed Focal Segmental Glomerulosclerosis, Minimal Change Disease, or Membranous Nephropathy, as well as younger patients with documented nephrotic syndrome. The study uses a Molecular Nephrology Board to assess participant profiles and match them with suitable clinical trials. A specialized Communication Team then shares this information with patients and their clinicians to help inform trial enrollment decisions. The study monitors outcomes over several months, including the effectiveness of communication methods, psychological distress, and kidney health endpoints specific to each matched trial. The study is open-label and involves no placebo or drug intervention but focuses on communication and matching strategies. Participants are involved in the matching process using data from their prior NEPTUNE observational study participation. Assessments include measuring communication effectiveness with the Teach Back method shortly after communication, as well as psychological distress evaluations at follow-up. Kidney health outcomes are tracked for up to five years depending on the individual trial. Participation requires regular nephrology care at a NEPTUNE study site, and consent and assent are obtained as appropriate.

NEPTUNE Match Study