In March 2020, researchers started recruiting individuals with fibrodysplasia ossificans progressiva (FOP) for a new trial.
The aim of the Saracatinib Trial to Prevent Fibrodysplasia Ossificans Progressiva (STOPFOP) was to investigate the drug AZD0530, also known as saracatinib, to see if it could stop the advancement of bone growth in FOP patients. The research team had already demonstrated that the medicine was effective in mice; if it worked the same way in humans, it would be a significant discovery.
Only a few weeks into recruitment, the world shut down due to the COVID-19 pandemic, and STOPFOP recruitment paused with it. The few patients who had already enrolled continued on with the trial throughout 2020, receiving the drug under the direction of the principal investigator, but new patients could not enroll until October 2020.
Recruiting participants during a global pandemic was hard and the funding the STOPFOP trial had secured from the European Commission Innovative Medicine Initiative would run out before all of the needed participants could enroll and complete the 18-month trial.
Since the IFOPA’s founding in 1988, we have been committed to supporting patients and their families as they navigate FOP. A critical component of that support is funding the search for treatments and a cure for FOP.
With this mission in mind, the IFOPA stepped in to provide three years of support for the principal investigator of the STOPFOP trial. Because the cost of the principal investigator was covered, the STOPFOP team was able to secure other grants to cover trial expenses, including nearly £725,000 from LifeArc, a UK-based funder. Clinical trials are very expensive and other FOP organizations and family fundraisers have joined in to support the STOPFOP trial as well.
Alex Bullock, PhD, University of Oxford, shared, “The STOPFOP pre-clinical research and current academic-led clinical trial have been a true partnership with the FOP community. Clinical trials are an essential step towards an approved drug and are conducted to ensure the safety and effectiveness of any new medication. Their success is reliant on patient participation and we thank all for contributing.
Every year, nearly two-thirds of the IFOPA’s annual budget is dedicated to funding the highest-quality research to determine if saracatinib could be a safe and effective treatment for FOP.
It's thanks to our generous supporters that we’re able to fund mission-critical research like the STOPFOP trial in addition to gene therapy, muscle regeneration, imaging alternatives and more. On September 17, we’ll come together as one community for our biggest research fundraiser of the year.
On the In Pursuit of a Cure Day of Giving, 100% of gifts will go directly to research plus gifts will be matched up to $50,000! The IFOPA has funded some of the biggest FOP research discoveries of the past two decades; join us on September 17 to be part of the next breakthrough.
Together, we can advance research for a more hopeful tomorrow!
