As many of you will know, Professor Matt Brown’s group from Queensland University of Technology and Princess Alexandra Hospital (PAH) and Dr Ben Whitehead from Brisbane’s Lady Cilento Children’s Hospital in Brisbane have been acting as the Australian/New Zealand centre for FOP clinical trials, currently with studies of Palovarotene sponsored by Clementia. Coordinated by Linda Bradbury (nurse practitioner, PAH) this has meant Australian/New Zealand patients have been able to participate in the studies without having to fly to the US, something that previously prevented many of us participating.
Clementia have recently announced that in an interim analysis of what is called a ‘phase 2’ study of Palovarotene that the medication looks to be effective at significantly reducing the amount of new bone that develops during FOP flares. Importantly the medication also appears pretty safe. This is extremely exciting and so Clementia have decided to proceed with the definitive ‘phase 3’ study of the medication. Professor Brown’s group will again be the Australian/New Zealand centre for that study, which will be open to FOP patients age 4 or more years.
The study won’t begin enrolling until towards the end of this year but clearly this is a great opportunity for FOP patients to get access to what at this point looks like it may be the first really effective medication to slow the progression of FOP.
If you have any queries about this, please send them by email to Linda at firstname.lastname@example.org
IPC Representative IFOPA
Secretary FOP Australia