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.
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: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
RECRUITINGNorth Kansas City, Missouri, 064116, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••