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Duchenne Hub UK was established in 2016 as a partnership between Duchenne UK and the John Walton Muscular Dystrophy Research Centre at Newcastle University.
Duchenne Hub UK brings together a group of clinical trial sites that have dedicated, trained staff, funded to carry out clinical research for Duchenne muscular dystrophy.
About Duchenne Hub UK
Duchenne Hub UK was set up because trials are important for finding new treatment options for people with Duchenne – and supporting the development of research into new treatments.
Before the Hub was launched, clinical trials for Duchenne were only conducted at Great Ormond Street Hospital (GOSH) in London and the Newcastle-upon-Tyne Hospital. These sites were working at full capacity and we discovered they were turning away trials from drug companies. This meant that only a few clinical trials could be conducted for Duchenne and very few patients were able to participate in trials each year.
Expanding access
By funding staff and equipment, and by training hospital teams, Duchenne Hub UK has expanded the number of sites running clinical trials - with a network of 11 sites now running trials for Duchenne. This means more trials can open, and more families can take part. Duchenne Hub UK also works collaboratively with industry partners to bring trials to UK and to help them recruit patients faster.
It acts as a one-stop-shop providing advice and support for our industry partners as they setup and run Duchenne clinical trials.
Access for everyone with Duchenne
To help ensure children and adults with Duchenne have fair access to clinical trials, Duchenne Hub UK set up a central recruitment database. Matching those interested in participating in trials, with suitable trials and trial sites.
It facilitates the link between the recruiting clinician and the patient's local clinician to ensure a joined up-approach. This means people with Duchenne can take part in research studies, regardless of where they live.
Clinical Trial Finder
Duchenne Hub UK also created a clinical trial finder, a powerful tool allowing patients, parents and caregivers to find clear and trustworthy information with details of every current and upcoming clinical trial research study for Duchenne in the UK.
Duchenne Hub UK now has a thriving network of
eleven clinical trial sites across England and Scotland, each funded and staffed to carry out Duchenne clinical trials and research studies.
83 trials
Helped run 83 trials accelerating the development of new treatments for Duchenne.
349 people
349 people have taken part in interventional clinical trials.
1,300 people
1,300 people have taken part in Duchenne research including interventional, open label extension, observational and natural history studies.
17
Partnered with 17 leading companies and 5 clinical research organisations, advancing Duchenne research.
Recruiting for a Clinical Trial?
If you’re planning a clinical trial for Duchenne in the UK, we’d love to hear from you.
