BMD Hub Central Recruitment Database

The BMD Hub Central Recruitment Database is a national contact list of patients with Becker Muscular Dystrophy (BMD) who are interested in participating in research studies.  

Over the past few years, there has been an increased interest in BMD with upcoming natural history and interventional clinical trials. However, access to these research studies is often limited to patients followed up in expert neuromuscular centres, more likely to be selected to conduct research studies, due to the complexity of the disease and the infrastructure required to set up clinical trials.  This creates inequality of access and inevitably some challenges to people with BMD and their families who might feel excluded from participation in clinical trials unless they are regularly seen at one of the clinical trial sites. Also, as Becker muscular dystrophy is a rare disease, clinicians might struggle to identify patients to participate in clinical trials.  

The objective of the BMD Hub Central Recruitment Database is to understand if maintaining a centrally coordinated national recruitment contact list of patients with BMD who are interested in participating in research studies in the UK facilitate a fairer access to clinical trials and therefore it is beneficial to patients with BMD and trial sites. 

The BMD Hub Central Recruitment Pilot is a project coordinated by the John Walton Muscular Dystrophy Research Centre (Newcastle University), funded by Edgewise Therapeutics, and collaborating with UK patient organisations focused on BMD.