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New kidney disease registry aims to unlock secrets of FSGS and MCD

NCT ID NCT03949972

Knowledge-focused Sponsor: Prof. Dr. Paul Brinkkoetter 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 26, 2026 · Last updated Jun 26, 2026

Summary

This registry is gathering health information and biological samples from 500 people with focal segmental glomerulosclerosis (FSGS) or minimal change disease (MCD), two rare kidney conditions. Researchers will track participants over 10 years to understand how these diseases progress and affect quality of life. The goal is to build a resource that can help future studies find better ways to diagnose and treat these conditions.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could provide the data and samples needed to develop better diagnostics and treatments for FSGS and MCD.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly test any therapy, and results may take years to impact patient care.

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 500 people

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

Started

Apr 2018

Expected to finish

Mar 2033

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

Pediatric patients until 18 years of age presenting with or diagnosed with idiopathic nephrotic syndrome or a biopsy-proven diagnosis of MCD or FSGS. Candidate participants need to be willing to provide written informed consent. Adult patients 18 years and above with a biopsy-proven diagnosis of primary or secondary FSGS or MCD. Candidate participants need to be willing to provide written informed consent.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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.

Inclusion Criteria (cohort A): * written informed consent * 17 or less years of age * idiopathic nephrotic syndrome Inclusion Criteria (cohort B): * written informed consent * older or equal to 18 years of age * biopsy-proven primary or secondary FSGS or MCD or biopsy-proven recurrence of disease in kidney transplant. Exclusion Criteria (both cohorts): * Prior kidney transplant without biopsy-proven recurrence * A clinical diagnosis of other glomerular disease resulting in secondary MCD or FSGS as judged by the treating physicians. * Refusal to provide written informed consent * (Anticipated) incompliance with visit schedule

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Conditions

The condition(s) this trial relates to.

focal segmental glomerulosclerosis idiopathic nephrotic syndrome lipoid nephrosis macular corneal dystrophy nephrotic syndrome

As listed by the trial registrant

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

Glomerulosclerosis, focal segmental Idiopathic nephrotic syndrome Minimal change disease

How to take part

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

  1. The places running it

    12 sites. 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

  • Charité University Hospital

    RECRUITING

    Berlin, Germany

  • Kindernephrologie Dachau

    RECRUITING

    Dachau, 85221, Germany

  • Kindernierenzentrum Bonn

    RECRUITING

    Bonn, 53127, Germany

  • Klinikum St. Georg

    RECRUITING

    Leipzig, 04129, Germany

  • Klinikum Stuttgart

    RECRUITING

    Stuttgart, 70174, Germany

  • Uniklinik RWTH Aachen

    NOT_YET_RECRUITING

    Aachen, 52074, Germany

  • University Hospital Erlangen

    NOT_YET_RECRUITING

    Erlangen, Germany

  • University Hospital Essen

    RECRUITING

    Essen, 45147, Germany

  • University Hospital Heidelberg

    RECRUITING

    Heidelberg, 69120, Germany

  • University Hospital Marburg

    RECRUITING

    Marburg, Germany

  • University Hospital Münster

    RECRUITING

    Münster, Germany

  • University Hospital of Cologne

    RECRUITING

    Cologne, North Rhine-Westphalia, 50937, Germany

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