New registry tracks Real-World safety of FOP drug palovarotene

NCT ID NCT06089616

Recruiting now Knowledge-focused Sponsor: Ipsen Source: ClinicalTrials.gov ↗

First seen Jun 25, 2026 · Last updated Jul 02, 2026 · Updated 2 times

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

fibrodysplasia ossificans progressiva myositis ossificans

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

FIBRODYSPLASIA OSSIFICANS PROGRESSIVA

Contacts and locations

Locations

Bone Research and Education Centre
ACTIVE_NOT_RECRUITING

Oakville, Canada
Edmonton Clinic Health Academy (ECHA)- University of Alberta
RECRUITING

Edmonton, Canada
The Regents of the University of California
RECRUITING

San Francisco, California, 94103, United States
The Trustees of the University of Pennsylvania, Office of Clinical Research-Legal Services, Perelman School of Medicine
RECRUITING

Philadelphia, Pennsylvania, 19104, United States
University Health Network (UHN) - Toronto General
RECRUITING

Toronto, Canada

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