New registry tracks Real-World safety of FOP drug palovarotene
NCT ID NCT06089616
First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This registry study follows about 100 people with FOP, a rare disease where soft tissue turns to bone. Some participants take palovarotene (an approved treatment), while others do not. Researchers will track side effects, flare-ups, and daily function over time to see how well the drug works in real life.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
Active substance
palovarotene
What this could lead to
If successful, this study could confirm that palovarotene is safe and helps manage FOP symptoms in the real world, supporting its continued use.
What could go wrong
This is an observational registry, not a controlled trial, so results may be less definitive. It only includes people already prescribed the drug, which may introduce bias.
Disclaimer
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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.
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
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