New registry tracks Real-World safety of FA drug over 5 years

NCT ID NCT06623890

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

Summary

This study follows about 300 people with Friedreich's ataxia who are taking the prescribed drug omaveloxolone (SKYCLARYS®). Researchers will collect safety information from regular doctor visits for up to 5 years. The goal is to see how many participants have serious side effects, especially heart or liver problems. No experimental treatment is given—this is an observational registry.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

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

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • Center for hereditary ataxias, Motol

    RECRUITING

    Motol, Prague, 5, 15006, Czechia

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Fondazione I.R.C.C.S. Istituto Neurologico C. Besta

    NOT_YET_RECRUITING

    Milan, 20133, Italy

  • HUB-Hôpital Erasme

    NOT_YET_RECRUITING

    Brussels, 1070, Belgium

  • Klinikum der Universität München

    NOT_YET_RECRUITING

    Munich, 80336, Germany

  • Medizinische Universität Innsbruck

    RECRUITING

    Innsbruck, 6020, Austria

  • Ospedale Pediatrico Bambino Gesu

    NOT_YET_RECRUITING

    Rome, 50, Italy

  • Scientific Institute, IRCCS E. Medea

    NOT_YET_RECRUITING

    Conegliano, 31015, Italy

  • Stichting Radboud universitair medisch centrum

    NOT_YET_RECRUITING

    Nijmegen, 6525, Netherlands

  • UCLA Neurology

    NOT_YET_RECRUITING

    Los Angeles, California, 90095, United States

  • University Hospital Aachen

    NOT_YET_RECRUITING

    Aachen, 52074, Germany

  • University of Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

  • University of Florida

    NOT_YET_RECRUITING

    Gainesville, Florida, 32608, United States

  • Universitätsklinikum Tübingen

    RECRUITING

    Tübingen, Baden-Würtemberg, 72076, Germany

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