Current clinical trials:
The International FOP Association maintain current information about active trials at the Clinical Trials section of the IFOPA website. This includes resources for people with FOP and their families who may be considering enrolling in clinical trials. This includes a global map of all the currently enrolling clinical trials sites. FOP Australia encourage you to check the map for the latest information, and to share this with your treating health care team.
In 2023 FOP Australia hosted an online community meeting with Royal North Shore Hospital in Sydney regarding enrolment in 3 active trials:
– Regeneron garetosmab OPTIMA trial: https://clinicaltrials.gov/ct2/show/NCT05394116?cond=NCT05394116&draw=2&rank=1
– Incyte INCB000928 trial: https://clinicaltrials.gov/ct2/show/NCT05090891?cond=NCT05090891&draw=2&rank=1
–Clementia’s FALKON study of IPN60130: https://clinicaltrials.gov/ct2/show/NCT05039515?term=FALKON&draw=2&rank=1and
RNSH also took over follow up of the patients previously enrolled through QUT in the previous Clementia /Ipsen trial of palovarotene: https://www.clinicaltrials.gov/ct2/show/NCT03312634?term=NCT03312634&draw=2&rank=1
The RNSH trials team welcome enquiries via NSLHD-EndocrineResearch@health.nsw.gov.au.
FOP Australia remain actively engaged with the International FOP Association and the global research effort, and will advocate for any opportunities for people in Australia and New Zealand to have access to trials.
Non-interventional trials:
FOP Registry
The participation of as many people as possible in the FOP Registry is also essential and we encourage patients and clinicians to enrol in this crucial IFOPA project which will be the foundation of future research progress. See clinicaltrials.gov (NCT 02745158) or ifopa.org for more information.
Natural History of FOP Study
This is a worldwide study aiming to document the natural progression of FOP, collecting data to compare with trials of potential therapies. This was sponsored by Clementia Pharmaceuticals, and included a site at the Princess Alexandra Hospital (PAH) and Lady Cilento Children’s Hospital (LCCH) in Brisbane, with Professor Matthew Brown. This was the first time there has been research on FOP conducted within Australia, marking a significant milestone for the management of FOP in Australia.
Novartis Study of FOP Related Biomarkers
Novartis Pharmaceuticals study collected urine samples from FOP patients for the assessment of biomarkers related to the disease, disease progression and for prediction of flare-ups of the disease. Disease related biomarkers in these patients are currently unknown. This study aimed to support the development of novel therapies for this disease.