FOP Clinical Trial Update

Original posting updated on Nov. 30, 2017

Two pharmaceutical companies are now recruiting for FOP clinical trials

It’s an exciting time in FOP research as not one, but two pharmaceutical companies with investigational drugs to treat FOP are now recruiting for worldwide clinical trials.* The decision to enroll in a clinical trial is an important one, and not everyone who wants to enroll will meet the entrance criteria. Eligible individuals who do participate will be helping to speed up the drug development process and will have access to potential treatments for FOP that are not yet on the market. Patients taking part in clinical trials will also receive specialized, multi-disciplinary medical care throughout the entire clinical trial.  

Clinical trial participation is a commitment that is not to be taken lightly and there are many factors for you and your family or other caregivers to consider.
 
With two clinical trials recruiting patients, you will want to start considering whether you are eligible to participate and which trial might be right for you. Below is a quick overview of several factors that you’ll want to consider. Click the links below for more details on the trials being conducted by Clementia and Regeneron.
 

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** See below for additional study participation criteria or visit clinicaltrials.gov.
*** For the first 6 months, 1/2 of the subjects will receive placebo and 1/2 of subjects will receive REGN2477. After 6 months of a placebo control, all study participants will then receive REGN2477 for 6 months.
**** Current flare-up symptoms acceptable

The best resource for helping you to make a decision about participating in an FOP clinical trial is your physician. If you have general questions about clinical trials, please contact us at together@ifopa.org.

* A third potential treatment for FOP is in a clinical trial; the trial is being run by Kyoto University and is only available in Japan.

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Recorded Webinars

Clementia's MOVE Trial
Learn more about Clementia's MOVE Trial led by the principal investigator, Dr. Ed Hsiao, at the University of California, San Francisco MOVE Trial site. Please note the following corrections: Slide 6 - Total number of flare ups is 42 (not 18); Slide 7 - Total number of flare ups is 140 (not 106); Slide 11 - Sweden is currently enrolling (not The Netherlands).

Regeneron's LUMINA-1 Trial
Learn more about Regeneron's LUMINA-1 Trial led by the principal investigator, Dr. Bob Pignolo, at the Mayo Clinic LUMINA-1 Trial site. Please note the following update: Slide 21 - Go to their page on ClinicalTrials.gov to find the recruiting status of “A Study to Examine the Safety, Tolerability and Effects on Abnormal Bone Formation of REGN2477 in Patients With Fibrodysplasia Ossificans Progressiva (LUMINA-1)."

Clinical Studies and Trials: Your Choice, Your Role, Your Responsibility
Adam Sherman, Director of Research Development & Partnerships, provides an overview of the drug development and approval process and the role that clinical studies and trials play. Learn more about how to select which study or trial is right for you.

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