Clinical Trials

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This is an exciting time for the FOP community with a number of clinical trials investigating effective treatments for FOP happening globally.

Whilst FOP is a considered an ultra-rare condition, there are many research institutions, pharmaceutical companies, and other organisations activity looking into an effective treatment and cure for FOP.

Although FOP is an incredibly rare disease, there a significant number of pharmaceutical companies who are actively looking into a range of drugs that may provide that treatment and cure that we all so desperately want and need.  Whilst not all of these drugs will become a treatment, the learning will inform researchers’ work and hopefully, will ultimately help to find the drug/s that will make FOP a manageable condition.

FOP Friends actively funds the FOP research team at the University of Oxford, led by Professor Alex Bullock. Without the financial support from us, they would not be able to continue the focused work they are doing to find a treatment for FOP.

FOP Friends also works in partnership with the IFOPA and other organisations to support the Accelerating Cures and Treatments (ACT) for FOP.  The programme encourages innovative research into finding a way to treat FOP.

See all the drugs for FOP, currently in development here.

How you can help: The FOP Connection Registry

The FOP Registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website.  An App has also just been released.  It is sponsored by the IFOPA.

The FOP Registry is open to all individuals with FOP and is available in seven languages: English, French, German, Italian, Portuguese, Russian and Spanish.

Every person living with FOP has unique information to share. The Registry collects this information to help further research to find treatments and, one day, a cure for FOP.

Data from the Registry will be used to help researchers, clinicians and drug developers to better understand FOP.  Completing the Registry is one way people affected by FOP can help to make a difference.

In recognition of the time it can take to complete a survey (around 1 hour, every six months), the IFOPA has implemented a Gift Card scheme.  Every time a participant completes a survey, they will receive a $25 (or equivalent) gift card as a way of saying thank you.  The gift-card reward program is open to new and existing FOP Registry participants.  Learn more here: Registry Rewards

Visit the FOP Registry website to register and make a difference.

Things to consider before committing to a Clinical Trial

Taking part in a clinical trial is a big decision, and one that shouldn’t be taken lightly.  There are risks associated with participating in trials so it is important that you read all information available; understand the potential risks and benefits; and make an informed decision regarding your or your child’s involvement in a study.

The IFOPA has produced an excellent list of questions for you to consider, if you are thinking of enrolling yourself or a child onto a clinical trial: Questions to ask.

The NHS has general advice regarding clinical trials which you can read here: Information about Participating in a Clinical Trial NHS

You can also read about other people’s experiences of taking part in a trial here: National Institute of Health Research UK

The IFOPA has produced a webinar, presented by their Director or Research Development & Partnerships, Adam Sherman.  This gives an overview of the drug development and approval process in the US and the role that clinical studies and trials play in this process.  Clinical Studies and Trials: Your Choice, Your Role, Your Responsibility.

If you have any questions regarding involvement in clinical trials, please do not hesitate to get in touch with us at

Click below to watch a short animation from the IFOPA: Exploring Clinical Trials for FOP