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Kidney disease mystery: scientists launch massive data hunt

NCT ID NCT01209000

Knowledge-focused Sponsor: University of Michigan Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is for people with rare kidney diseases like Minimal Change Disease, Focal Segmental Glomerulosclerosis, and Membranous Nephropathy. Researchers will collect health information and biological samples from 1,200 participants over many years. The goal is to better understand these diseases and improve future treatments, not to test a new drug or cure.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,200 people

The number the study aims to enrol. It can still change while the study runs.

Started

Apr 2010

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with signs and symptoms of kidney disease consistent with FSGS, MCD, MN or proteinuric renal disease or pediatric participants not previously biopsied, who present for patient care at participating clinical centers will be eligible for Cohort A (biopsy cohort) study population targeted for enrollment into the NEPTUNE study. To establish a cohort of pediatric participants with incident nephrotic syndrome, Cohort B, a non-biopsy cohort has been initiated for Protocol V4.0. This population, \<19 years of age, presenting for nephrotic syndrome and less than 30 days of immunosuppression therapy exposure, will also be targeted for enrollment into the cNEPTUNE study. Potential participants willing to receive their initial care and subsequent follow-up study visits at one of these sites are welcome to participate.

Ages

Up to 80 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Cohort A (biopsy cohort) Inclusion Criteria: Patients presenting with an incipient clinical diagnosis for FSGS/MCD or MN or pediatric participants not previously biopsied, with a clinical diagnosis for FSGS/MCD or MN meeting the following inclusion criteria: * Documented urinary protein excretion ≥1500 mg/24 hours or spot protein: creatinine ratio equivalent at the time of diagnosis or within 3 months of the screening/eligibility visit. * Scheduled renal biopsy Cohort B (non-biopsy, cNEPTUNE) Inclusion Criteria: * Age \<19 years of age * Initial presentation with \<30 days immunosuppression therapy * Proteinuria/nephrotic * UA\>2+ and edema OR * UA\>2+ and serum albumin \<3 OR * UPC \> 2g/g and serum albumin \<3 Exclusion Criteria (Cohort A\&B): * Prior solid organ transplant * A clinical diagnosis of glomerulopathy without diagnostic renal biopsy * Clinical, serological or histological evidence of systemic lupus erythematosus (SLE) as defined by the ARA criteria. Patients with membranous in combination with SLE will be excluded because this entity is well defined within the International Society of Nephrology/Renal Pathology Society categories of lupus nephritis, and frequently overlaps with other classification categories of SLE nephritis (68) * Clinical or histological evidence of other renal diseases (Alport, Nail Patella, Diabetic Nephropathy, IgA-nephritis, monoclonal gammopathy (multiple myelomas), genito-urinary malformations with vesico-urethral reflux or renal dysplasia) * Known systemic disease diagnosis at time of enrollment with a life expectancy less than 6 months * Unwillingness or inability to give a comprehensive informed consent * Unwillingness to comply with study procedures and visit schedule * Institutionalized individuals (e.g., prisoners)

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Get notified about this study

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Conditions

The condition(s) this trial relates to.

focal segmental glomerulosclerosis lipoid nephrosis macular corneal dystrophy membranous glomerulonephritis nephrotic syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Glomerulosclerosis, focal segmental Membranous nephropathy Minimal change disease (MCD)

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    37 sites in 2 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Atrium Health Levine Children's Hospital

    RECRUITING

    Charlotte, North Carolina, 28203, United States

  • Bellevue Hospital

    RECRUITING

    New York, New York, 10016, United States

  • CS Mott Children's Hospital, University of Michigan

    RECRUITING

    Ann Arbor, Michigan, 48109, United States

  • Children's Hospital Colorado

    NOT_YET_RECRUITING

    Aurora, Colorado, 80045, United States

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Children's Mercy Hospital

    RECRUITING

    Kansas City, Missouri, 64108, United States

  • Cleveland Clinic

    RECRUITING

    Cleveland, Ohio, 44195, United States

  • Cohen Children's Hospital

    RECRUITING

    New Hyde Park, New York, 11040, United States

  • Columbia University Medical Center

    RECRUITING

    New York, New York, 10032, United States

  • Credit Valley Hospital

    RECRUITING

    Toronto, Ontario, L5M 2N1, Canada

  • Emory University and Children's Healthcare of Atlanta

    RECRUITING

    Atlanta, Georgia, 30322, United States

  • John Stroger Cook County Hospital

    RECRUITING

    Chicago, Illinois, 60680, United States

  • Johns Hopkins Medical Institute

    RECRUITING

    Baltimore, Maryland, 21287, United States

  • Kidney Disease Section, NIDDK, NIH

    COMPLETED

    Bethesda, Maryland, 20892, United States

  • Lundquist Biomedical Research Institute at Harbor UCLA Medical Center

    RECRUITING

    Torrance, California, 90502, United States

  • Mayo Clinic

    COMPLETED

    Rochester, Minnesota, 55905, United States

  • Medical University of South Carolina

    RECRUITING

    Charleston, South Carolina, 29425, United States

  • MetroHealth Hospital at Case Western Medical Center

    COMPLETED

    Cleveland, Ohio, 44109, United States

  • Montefiore Medical Center

    RECRUITING

    The Bronx, New York, 11040, United States

  • New York University Medical Center

    RECRUITING

    New York, New York, 10010, United States

  • New York University Veterans Administration

    RECRUITING

    New York, New York, 10016, United States

  • Providence Medical Research Center

    RECRUITING

    Spokane, Washington, 99204, United States

  • Scarborough Hospital

    COMPLETED

    Scarborough Village, Ontario, M1H 3G4, Canada

  • Seattle Children's Hospital

    RECRUITING

    Seattle, Washington, 98145, United States

  • Stanford University School of Medicine

    RECRUITING

    Palo Alto, California, 94304, United States

  • Sunnybrook Hospital

    RECRUITING

    Toronto, Ontario, M4N 3M5, Canada

  • Temple University

    RECRUITING

    Philadelphia, Pennsylvania, 19140, United States

  • Texas Children's Hospital - Baylor College of Medicine

    RECRUITING

    Houston, Texas, 77030, United States

  • The Ohio State University Wexner Medical Center

    RECRUITING

    Columbus, Ohio, 43210, United States

  • University Health Network

    RECRUITING

    Toronto, Ontario, M5G2C4, Canada

  • University Hospital Rainbow Babies & Children's Hospital

    COMPLETED

    Cleveland, Ohio, 44106, United States

  • University of California San Francisco Benioff Children's Hospitals

    NOT_YET_RECRUITING

    San Francisco, California, 94158, United States

  • University of Colorado Anschutz School of Medicine

    NOT_YET_RECRUITING

    Aurora, Colorado, 80045, United States

  • University of Kansas Medical Center

    RECRUITING

    Kansas City, Kansas, 66160, United States

  • University of Miami Miller School of Medicine

    RECRUITING

    Miami, Florida, 33136, United States

  • University of Michigan Medical Center

    RECRUITING

    Ann Arbor, Michigan, 48109, United States

  • University of North Carolina at Chapel Hill

    RECRUITING

    Chapel Hill, North Carolina, 27599, United States

  • University of Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • University of Southern California-Children's Hospital

    RECRUITING

    Los Angeles, California, 90227, United States

  • University of Texas-Southwestern

    RECRUITING

    Dallas, Texas, 75390, United States

  • University of Washington

    RECRUITING

    Seattle, Washington, 98195, United States

  • Wake Forest School of Medicine

    WITHDRAWN

    Winston-Salem, North Carolina, 27157, United States

  • Washington University - St Louis

    NOT_YET_RECRUITING

    St Louis, Missouri, 63110, United States

  • York Central Hospital

    COMPLETED

    Richmond Hill, Ontario, L4C 4Z3, Canada

More trials for these conditions

Other studies related to the condition(s) this trial covers.