DMD Hub launches pilot project to improve access to research studies
For years, DMD families have told us about their frustrations at not being able to find out about or enrol in research studies and clinical trials. Which is why through the DMD Hub, we are launching a centrally coordinated national recruitment database, aiming to make research more accessible to all.
In 2017, Duchenne UK asked for families and patients’ views on taking part in Duchenne muscular dystrophy (DMD) research studies. An overwhelming majority (91%) wanted to take part in research, but felt a sense of desperation for not being able to find out about or enrol in studies.
In response, Duchenne UK, in collaboration with the John Walton Muscular Dystrophy Research Centre in Newcastle and GOSH in London, set up the DMD Hub, a national network of sites running research studies for DMD. We also developed the DMD Hub Clinical Trial Finder, an incredible resource to help patients and families find out about every clinical trial and study taking place in the UK.
The DMD Hub is now going one step further and launching a new pilot project aiming to provide fair and equal access to DMD studies, regardless of where you live in the UK.
The Central Recruitment Pilot Project will begin on 1st April 2022 and run for 12 months. The pilot phase of the project aims to set up a central contact list of DMD patients and their preferences for taking part in research studies, and will assess whether this is an effective way to ensure more inclusive recruitment.