StopFOP

StopFOP is an international clinical trial investigating the drug saracatinib (AZD0530) to prevent the progression of FOP.

Collaboration and Community Role

The study brings together researchers, clinicians, patient organisations, and the wider FOP community. FOP Friends is playing a key role, supporting and representing patients throughout the project.

Research and Identification of Saracatinib

This potential treatment was identified by the University of Oxford research team after months of intensive work. Utilising multiple scientific techniques, they reviewed and compared several kinase inhibitors to find one that might demonstrate specificity for the ALK2 kinase. The overactivity of this enzyme plays a key role in the rogue pathway that leads to the abnormal bone formation (heterotopic ossification) characteristic of FOP. The Oxford team’s identification of saracatinib entirely triggered and enabled the StopFOP clinical trial, which optimised the probability of identifying a future effective treatment. This critical research at the University of Oxford was funded by FOP Friends.

Trial Progress and Next Steps

The primary goal of the StopFOP trial is to assess the safety and efficacy of saracatinib in preventing new bone growth in adult FOP patients. The fact that most participants have progressed from the initial phase to the open-label extension phase, where they will all receive saracatinib, strongly suggests the treatment was well tolerated, and patients wish to remain on the trial.

We expect formal results from the trial late in 2025.