Research
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.
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 currently in development for FOP here.
We recognise that there’s wide range of knowledge and understanding about the ‘bench to bedside’ process within our FOP community. We have some families who are experienced, have been on this journey for many years, and perhaps have even contributed to the trial process in one way or another.
We have other families who maybe feel overwhelmed by the topic, maybe science at school ‘wasn’t their thing’ and don’t know where to start. We also have very new families on board, who are maybe looking for an overview of the FOP research landscape.
We planned two webinars to support our community in understanding this process a little better.
Learn more here: FOP Research Webinars
Learn more…
Understanding the research process and landscape can be hard (here’s a secret: we find it tricky too!). So, to help our families and supporters, we’ve created a Research Learning Hub.
There is a wealth of information out there on the internet, so we have tried to collate some of the best of what’s out there. It most certainly isn’t everything, so feel free to explore further with a quick Google search (just be sure to only use reputable sources and organisations). And if you happen to find a great resource you think others might find useful, please let us know too!
In our Hub, you’ll find short explainer videos, introductory articles about genetics and trials, and a glossary. These materials have been chosen to provide you with background information and context, allowing you to do some pre-reading and get familiar with key concepts at your own pace.
Our aim is to demystify the science and processes behind FOP research and drug development, empowering you with knowledge, and preparing you for the journey ahead.
Research Learning Hub
Pharmaceutical Research Updates
Read the latest updates from the pharmaceutical companies who are actively researching into a treatment and a cure for FOP.
Visit:Pharmaceutical Updates
We are pleased to bring you the latest on the stopfop trial here: StopFOP
Clinical Trials Updates
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 info@fopfriends.com
You can help!
There is an easy way to help progress the research without even taking part in a trial! The FOP Registry!
The Registry is independently operated by the IFOPA and is the largest and most detailed global collection of clinical and medical information about FOP, contributed by individuals living with the condition. Its primary purpose is to help clinicians and researchers gain a deeper understanding of how FOP affects people, aiming to improve patient care and accelerate the development of new treatments and a cure. The Registry is open to anyone with FOP, with information securely provided online by the person living with FOP or their caregiver, ensuring only anonymous data is shared with researchers.
Participants also receive a $25 gift card every time they complete a survey.
Learn more here: The FOP Registry
Download the brochure: Here
