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

NCT ID NCT03949972

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.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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.

Contacts and locations

Study contacts

  • Contact

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  • Contact

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Locations

  • Charité University Hospital

    RECRUITING

    Berlin, Germany

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  • Kindernephrologie Dachau

    RECRUITING

    Dachau, 85221, Germany

    Contact Phone: •••-•••-•••• Email: •••••@•••••

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  • Kindernierenzentrum Bonn

    RECRUITING

    Bonn, 53127, Germany

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Klinikum St. Georg

    RECRUITING

    Leipzig, 04129, Germany

    Contact Phone: •••-•••-•••• Email: •••••@•••••

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  • Klinikum Stuttgart

    RECRUITING

    Stuttgart, 70174, Germany

    Contact Email: •••••@•••••

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  • Uniklinik RWTH Aachen

    NOT_YET_RECRUITING

    Aachen, 52074, Germany

    Contact Email: •••••@•••••

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    Contact Email: •••••@•••••

  • University Hospital Erlangen

    NOT_YET_RECRUITING

    Erlangen, Germany

    Contact Email: •••••@•••••

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  • University Hospital Essen

    RECRUITING

    Essen, 45147, Germany

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    Contact Phone: •••-•••-•••• Email: •••••@•••••

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  • University Hospital Heidelberg

    RECRUITING

    Heidelberg, 69120, Germany

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    Contact Phone: •••-•••-•••• Email: •••••@•••••

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    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • University Hospital Marburg

    RECRUITING

    Marburg, Germany

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • University Hospital Münster

    RECRUITING

    Münster, Germany

    Contact Email: •••••@•••••

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  • University Hospital of Cologne

    RECRUITING

    Cologne, North Rhine-Westphalia, 50937, Germany

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    Contact Phone: •••-•••-•••• Email: •••••@•••••

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    Contact Phone: •••-•••-•••• Email: •••••@•••••