Making sure everyone with Duchenne muscular dystrophy (DMD) has access to clinical research trials
When our founders started the charity, they were shocked to learn how limited the opportunities to take part in DMD clinical research trials were for people living with DMD in the UK.
To solve the issue, in 2016 they created the DMD Hub. It’s a collaboration between Duchenne UK and neuromuscular centre of excellence; The John Walton Muscular Dystrophy Research Centre at Newcastle University.
The DMD Hub is a network of clinical trial sites that have dedicated, trained staff, funded to carry out research studies for DMD.
As the number of clinical trials has increased in recent years, so the DMD Hub Central Recruitment Pilot Project takes the DMD Hub’s original mission a step further.
Funded by Duchenne UK since 2022 and coordinated by Newcastle University, this project has established a national contact list of children and adults with DMD who are interested in taking part in research studies.
The database contains information that supports clinical sites to identify potentially eligible candidates for research studies, as well as the contact details for their main neuromuscular centre and clinician.
It means people with DMD are now able to take part in research studies, regardless of where they live.
By the end of 2023, 208 DMD patients were registered with it. Eight studies have used the platform to recruit people for trials and 22 people have been recruited as a direct result of using it. Every commercial DMD trial opened in the UK since the establishment of the Central Recruitment Database has recruited patients using it.
A landmark year of achievement and impact