Tracking a rare disease drug in the real world
NCT ID NCT06089616
Summary
This study aims to collect long-term safety and effectiveness information on the drug palovarotene for people with Fibrodysplasia Ossificans Progressiva (FOP), a rare disease that causes bone to grow in muscles and soft tissues. It will follow about 100 people, both children and adults, who are either taking the drug as part of their regular care or are not taking it. The main goal is to understand the drug's real-world safety profile and how it affects patients' daily activities and physical function over time.
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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
NOT_YET_RECRUITINGEdmonton, Canada
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The Regents of the University of California
ACTIVE_NOT_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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