Finding a cure

In a race against time, the search for a cure is now international.

The University of Oxford and The University of Pennsylvania are currently the two main FOP research institutes, however there are others around the world who are also looking for a cure.  FOP research will not only benfit those with the condition but will also help many other more common conditions such as Osteoperosis, Arthritis, Hetrotopic Ossifications (a major complication in sport and military injuries and hip replacement surgeries), and other bone and muscle disorders.


Q&with Dr Richard Keen

Dr Richard Keen is a Consultant Rheumatologist at the Royal National Orthopaedic Hospital NHS Trust in London. He currently works with about a dozen FOP patients in the UK.

When did you first become aware of FOP?

I’ve been in my current job for about 17 years, and one of the very first patients I saw was a teenager with FOP. It was a very steep learning curve for me. At that stage there was still so little information that my focus was on supportive treatment and managing flare-ups. I became aware of FOP Friends two years ago when I attended their family gathering. One of my patients told me about it. It made me aware of the research and the trials and made me realise there was now a lot more I could offer my patients. I was really motivated by the progress that had already been made.

Are you a part of any clinical networks to support FOP patients?

I’m part of an EU FOP Consortium that includes doctors in the UK, Italy, the Netherlands and France. There’s also currently a call out from the EU to establish a reference network for rare bone diseases, and there’s been quite a lot of interest in that. Having one would give more FOP patients access to the expertise they need, and it should also drive improvements in all the individual countries involved.

How can the FOP community help support clinicians, and what do you suggest that GPs and other local health professionals do when one of their patients is diagnosed with FOP?

I think the first thing is for the patient to make sure the consultant they’re seeing has the most up-to-date knowledge on FOP. Don’t be afraid as a patient or family member to question them and make suggestions about who they could contact. The IFOPA and FOP Friends make the latest information available. I know that patients and their families can often feel isolated and afraid. They can always contact us and we will happily contact their local consultant and GP. We will work with them so that there is a management plan ready for when flare ups do occur. You need to have a plan before they happen, and everyone involved in the patient’s care needs to know about them. I would also really encourage patients to tell us anything that they’re experiencing. It may not be relevant, but it could open up new avenues to explore for treatment. There are things that only the patients can tell us and that we have no way of knowing.

Are you directly involved in any FOP research projects?

Yes, we are the only UK centre involved in the Clementia drug trial with palovarotene. We’re also involved in the Clementia natural history study. And we may be involved in more trials in the future.

What do you think is the biggest challenge facing FOP research right now?

In the last 10 years, since the gene was discovered, the rate of discoveries of drugs that could work has been rapid. It’s incredible how things have advanced in a decade, and it’s exciting that there are so many potential drug targets out there now. Regeneron’s findings in animal studies look positive, but putting any drug into trial is challenging, and it is even more challenging to take a drug from animal testing to clinical trials when there is such a small patient group. There are many ethical issues: should you trial them on children, where the need is greater but so are the risks, or in adults? Could you do trials in people after they’ve had surgery? If you could operate to free things up and then give people a drug afterwards that would be great. There are challenges, but I think all these things are solvable and possible with the people that are involved.

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