This is an exciting time for the FOP community. Globally and in the UK, there are a number of active clinical trials and studies investigating effective treatments for FOP.
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.
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
We hosted a webinar with Professors Alex Bullock (University of Oxford), Marelise Eekhoff (Amsterdam University Medical Centre), and Richard Keen (Royal National Orthopaedic Hospital, London). Professor Alex Bullock and Professor Marelise Eekhoff explain the research behind the trial and the progress so far, with Professor Richard Keen updating patients on what enrollment on the trial would entail. For more information on the trial, visit:www.en.stopfop.com
Registration for this trial closed on Sunday 30th April 2023. For more information on this trial, please contact FOP Friends directly.
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.
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