Natural History Study Data Shared With The FOP Registry

Data sharing benefits the FOP community

We are pleased to share exciting news with the FOP community regarding the Natural History Study (NHS). Select data from the NHS has been transferred to the FOP Registry. 
The Clementia, an Ipsen Company Natural History Study is a three-year study designed to gain insight into FOP disease progression, the impact of FOP on subjects' physical functioning, and clinical features and biomarkers that may be useful in the diagnosis and monitoring of disease progression. 
The IFOPA entered into a data sharing agreement with Clementia to transfer NHS data into the FOP Registry for all patients who enrolled and consented in both studies. This data transfer ensures that all FOP clinicians, researchers and drug developers have access to this important and comprehensive dataset. Not only will this help with development of new research discoveries and treatments, it may likely expedite the process as well.
We are grateful to Clementia for their commitment to advancing FOP research. As other studies and trials are launched, the IFOPA is committed to working with study and trial sponsors on additional data sharing agreements. 
If you haven't yet enrolled in the Registry, make sure your FOP experience is included by enrolling at And, if you are already enrolled in the Registry, be sure to complete your Follow-up Surveys. Watch for emails from [email protected].

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