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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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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Center for hereditary ataxias, Motol
RECRUITINGMotol, Prague, 5, 15006, Czechia
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Children's Hospital of Philadelphia
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
Contact Phone: •••-•••-••••
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Fondazione I.R.C.C.S. Istituto Neurologico C. Besta
NOT_YET_RECRUITINGMilan, 20133, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
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HUB-Hôpital Erasme
NOT_YET_RECRUITINGBrussels, 1070, Belgium
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Klinikum der Universität München
NOT_YET_RECRUITINGMunich, 80336, Germany
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Medizinische Universität Innsbruck
RECRUITINGInnsbruck, 6020, Austria
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Ospedale Pediatrico Bambino Gesu
NOT_YET_RECRUITINGRome, 50, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Scientific Institute, IRCCS E. Medea
NOT_YET_RECRUITINGConegliano, 31015, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Stichting Radboud universitair medisch centrum
NOT_YET_RECRUITINGNijmegen, 6525, Netherlands
Contact Phone: •••-•••-•••• Email: •••••@•••••
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UCLA Neurology
NOT_YET_RECRUITINGLos Angeles, California, 90095, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University Hospital Aachen
NOT_YET_RECRUITINGAachen, 52074, Germany
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Colorado
RECRUITINGAurora, Colorado, 80045, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Florida
NOT_YET_RECRUITINGGainesville, Florida, 32608, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Universitätsklinikum Tübingen
RECRUITINGTübingen, Baden-Würtemberg, 72076, Germany
Contact Phone: •••-•••-••••
Contact