New registry tracks Real-World safety of FA drug over 5 years
NCT ID NCT06623890
First seen May 04, 2026 · Last updated May 12, 2026 · Updated 2 times
Summary
This observational study follows 300 people with Friedreich's ataxia who are taking the prescribed drug omaveloxolone (SKYCLARYS®). Researchers will collect safety information from routine doctor visits over up to 5 years. The goal is to monitor serious side effects, especially heart and liver issues. No experimental treatment is given—participants continue their normal care.
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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.
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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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: •••••@•••••
Contact
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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
Conditions
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