New registry study tracks Real-World safety of FOP drug palovarotene
NCT ID NCT06089616
First seen Nov 01, 2025 · Last updated May 08, 2026 · Updated 27 times
Summary
This study follows up to 100 children and adults with fibrodysplasia ossificans progressiva (FOP), an ultra-rare disease where bone grows in places it shouldn't, causing pain and disability. Researchers will collect real-world safety data on those already taking the approved drug palovarotene and compare them to untreated participants. The goal is to better understand long-term side effects and how well the drug works in daily life.
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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
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Bone Research and Education Centre
ACTIVE_NOT_RECRUITINGOakville, Canada
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Edmonton Clinic Health Academy (ECHA)- University of Alberta
RECRUITINGEdmonton, Canada
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The Regents of the University of California
RECRUITINGSan Francisco, California, 94103, United States
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The Trustees of the University of Pennsylvania, Office of Clinical Research-Legal Services, Perelman School of Medicine
ACTIVE_NOT_RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
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University Health Network (UHN) - Toronto General
RECRUITINGToronto, Canada
Conditions
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