Design of the Nephrotic Syndrome Study Network (NEPTUNE) to evaluate primary glomerular nephropathy by a multidisciplinary approach.
Crystal A Gadegbeku, Debbie S Gipson, Lawrence B Holzman...
https://pubmed.ncbi.nlm.nih.gov/23325076Actively Recruiting
Phase Not Applicable
Age: 1Year - 80Years
All Genders
ID04571658
Implementing Precision Medicine for Glomerular Diseases in the Nephrotic Syndrome Study Network (NEPTUNE)
Led by University of Michigan · Updated on 2026-05-06
375
Participants Needed
16
Research Sites
N/A
Total Duration
On this page
Sponsors
U
University of Michigan
Lead Sponsor
N
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are evaluating a new way to communicate personalized clinical trial matches to kidney patients and their doctors. This open-label study focuses on patients with nephrotic syndrome and related kidney diseases such as Focal Segmental Glomerulosclerosis, Minimal Change Disease, and Membranous Nephropathy. The purpose is to improve how patients and clinicians connect about clinical trials that best fit individual patient profiles. The study includes four key parts: recruiting participants from the NEPTUNE observational study, creating patient profiles and matching them to clinical trials using molecular data, developing communication tools to share these matches with patients and investigators, and comparing kidney health outcomes between those enrolled in well-matched trials versus less aligned or unknown matches. An interdisciplinary team experienced in explaining complex kidney research supports this communication. Participants from the NEPTUNE study will be involved in assessments at several time points, including within the first month, at 12 weeks, and up to 60 months. These assessments measure how well the communication works, psychological distress, and kidney health outcomes specific to each participant's matched trial. Participants will have regular nephrology care at NEPTUNE study sites and will complete questionnaires and evaluations throughout the study period ending in 2029.
CONDITIONS
Brief Title
NEPTUNE Match Study
Who Can Participate
Age: 1Year - 80Years
All Genders
Eligibility Criteria
You may qualify if you...
- Consented and eligible participants in the biopsied or non-biopsied cohorts of the NEPTUNE observational study
- Potential eligibility for NEPTUNE Match partnering trials based on age and trial enrollment criteria
- Receiving regular nephrology healthcare at a NEPTUNE study site
- Willing and able to consent or assent to participate in NEPTUNE Match
You will not qualify if you...
- Not currently a participant in the NEPTUNE observational study
- Non-English or non-Spanish speaking
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Communication
Duration - Up to 4 weeks
Participants receive patient-specific clinical trial matching information communicated by an interdisciplinary team experienced in precision nephrology and health education.
1 communication visit (in-person or remote)
Follow-up
Duration - Approximately 4 weeks
Participants are assessed for understanding and psychological distress after communication of trial matching information.
1 to 2 follow-up visits
Trial Site Locations
Total: 16 locations
1
Emory University Hospital - Children's Hospital of Atlanta
Atlanta, Georgia, United States, 30322
Actively Recruiting
2
John H. Stroger, Jr., Hospital of Cook County
Chicago, Illinois, United States, 60612
Actively Recruiting
3
University of Kansas Medical Center
Kansas City, Kansas, United States, 66160
Actively Recruiting
4
Johns Hopkins Medicine
Baltimore, Maryland, United States, 21287
Actively Recruiting
5
University of Michigan
Ann Arbor, Michigan, United States, 48109
Enrolling by Invitation
6
Children's Mercy Hospital
Kansas City, Missouri, United States, 64108
Actively Recruiting
7
Northwell/Cohen's Children's Hospital
New Hyde Park, New York, United States, 11040
Actively Recruiting
8
Columbia University Medical Center
New York, New York, United States, 10032
Actively Recruiting
9
University of North Carolina Chapel Hill
Chapel Hill, North Carolina, United States, 27514
Actively Recruiting
10
Cleveland Clinic Foundation
Cleveland, Ohio, United States, 44106
Actively Recruiting
11
Hospital of the University of Pennsylvania
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
12
Temple University
Philadelphia, Pennsylvania, United States, 19122
Actively Recruiting
13
Medical University of South Carolina
Charlotte, South Carolina, United States, 29425
Actively Recruiting
14
Seattle Children's Hospital
Seattle, Washington, United States, 98105
Actively Recruiting
15
University of Washington Medical Center
Seattle, Washington, United States, 98195
Actively Recruiting
16
Providence Sacred Heart Medical Center
Spokane, Washington, United States, 99204
Actively Recruiting
Loading map...
Research Team
H
Hailey E Desmond, MS
C
Chrysta C Lienczewski, BS
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NA
Model
SINGLE_GROUP
Primary Purpose
OTHER
Number of Arms
1
Similar Trials
Frequently Asked Questions
Have more questions? Get in touch with our team for quick support
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here
Published Research Related To This Trial
JAK-STAT signaling is activated in the kidney and peripheral blood cells of patients with focal segmental glomerulosclerosis.
Jianling Tao, Laura Mariani, Sean Eddy...
https://pubmed.ncbi.nlm.nih.gov/30093081The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review.
Thi Thuy Ha Dinh, Ann Bonner, Robyn Clark...
https://pubmed.ncbi.nlm.nih.gov/26878928The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI).
T M Marteau, H Bekker
https://pubmed.ncbi.nlm.nih.gov/1393159Support for the reliability and validity of a six-item state anxiety scale derived from the State-Trait Anxiety Inventory.
Audrey Tluczek, Jeffrey B Henriques, Roger L Brown
https://pubmed.ncbi.nlm.nih.gov/19902657