Implementing Precision Medicine for Glomerular Diseases in the Nephrotic Syndrome Study Network (NEPTUNE)
University of Michigan
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.
Description
This is a prospective, open-label study testing the ability to effectively communicate patient-specific clinical trial matching with kidney patients and clinician investigators. The study consists of four components: 1. Recruitment of participants from the NEPTUNE observational cohort study 2. Generation of participant profile-trial match assessment using data from the NEPTUNE observational study and profiling units by the NEPTUNE Molecular Nephrology Board 3. Establishing and testing a framework to communicate disease-trial drug mechanism matching with investigators and patients 4. Retrospec…
Eligibility
- Age range
- 1–80 years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: 1. Consented and eligible participants in the biopsied or non-biopsied cohorts of the NEPTUNE observational study 2. Must be potentially eligible for the NEPTUNE Match partnering trials (e.g. if no trial is enrolling a participant under age 6, those under 6 are not eligible). Note: NEPTUNE Match partnering trials and associated eligibility criteria are expected to be dynamic and change as trial protocols are developed, activated, and amended. 3. Regular nephrology healthcare provided at a NEPTUNE study site. 4. Willing and able to consent, and as appropriate assent, to…
Interventions
- OtherCommunication
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.
Locations (16)
- Emory University Hospital - Children's Hospital of AtlantaAtlanta, Georgia
- John H. Stroger, Jr., Hospital of Cook CountyChicago, Illinois
- University of Kansas Medical CenterKansas City, Kansas
- Johns Hopkins MedicineBaltimore, Maryland
- University of MichiganAnn Arbor, Michigan
- Children's Mercy HospitalKansas City, Missouri