Worldwide FOP database launches to unlock secrets of rare bone disorder
NCT ID NCT02745158
First seen Apr 16, 2026 · Last updated May 16, 2026 · Updated 4 times
Summary
This study creates a global online registry for people with Fibrodysplasia Ossificans Progressiva (FOP), a rare condition where soft tissues turn into bone. Participants and their doctors can securely report symptoms, flare-ups, and mobility changes over time. The goal is to gather real-world data to better understand FOP and help design future clinical trials. No treatments or medications are given in this observational study.
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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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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: •••••@•••••
Conditions
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