DMD Hub Central Recruitment Database

DMD Hub Central Recruitment Database

Over the past 15 years, there has been an increase in the number of Duchenne muscular dystrophy research studies (natural history studies and clinical trials) evaluating the effect of new interventions and treatments, better understanding the natural course of the disease, and exploring new markers to measure disease progression or treatment effect. Due to the complexity of the disease and of setting up clinical sites to conduct research studies, they are often run in a limited number of centres in the UK. Inevitably, this creates challenges for both clinicians and patients and their families. The DMD Hub Central Recruitment Database is a national contact list of national children and adults with DMD, their condition and their preferences relating to participation in DMD research studies. The database is a computer record which houses this information in order to support clinical sites with the identification of potentially eligible candidates for research studies. This includes participant genetic diagnosis and other key details of their disease, as well as the contact details for their main neuromuscular centre and clinician.

Participants are asked to consent to register to the database, and to consent to the responsible member of the DMD Hub staff contacting their main neuromuscular clinician to confirm some of the information provided, if required.

Background to the DMD Hub Central Recruitment Database

The expansion of the DMD Hub Central Recruitment Database (CRD) to a research database as resource for the DMD patient and clinical community will build upon the success of the DMD Hub Central Recruitment Pilot Project (launched on the 31st March 2022, and funded by Duchenne UK). The pilot project successfully delivered the current version of a national recruitment database of UK based people with DMD, who are interested in participating in clinical research studies. The CRD is part of the DMD Hub which launched in 2016 as a partnership between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Duchenne UK; the DMD Hub team is responsible for the coordination of the CRD.