Worldwide FOP database launches to unlock secrets of rare bone disease
NCT ID NCT02745158
First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This global registry collects information from people with Fibrodysplasia Ossificans Progressiva (FOP), a rare condition where soft tissues turn into bone. Up to 800 patients worldwide can report their symptoms, flare-ups, and mobility changes through a secure online portal. The goal is to better understand how FOP progresses and to prepare the community for future clinical trials.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this registry could provide crucial insights into FOP's natural history and help design better treatments and clinical trials.
- What could go wrong
- This is an observational registry, not a treatment study. It collects data but does not test any intervention, so it cannot directly improve health.
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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
RECRUITINGNorth Kansas City, Missouri, 064116, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.