On the 29th of February, in celebration of Rare Disease Day, the BMD Hub was launched.

Modelled after the successful DMD Hub, a collaboration between Duchenne UK and Newcastle University, the BMD Hub’s goal is to enhance clinical trial readiness in BMD (Becker Muscular Dystrophy) by supporting sites, addressing specific industry needs, linking with the patient community, and promoting more equitable access to clinical research for patients with BMD.

Central to this effort is the establishment of the BMD Hub Central Recruitment Database, a centrally coordinated national recruitment contact database, collecting information from and about people with BMD and their preferences for potential participation in research studies in the UK.

Additionally, through the creation of a network, the BMD Hub aims to bridge educational gaps among healthcare professionals, patients, and families. The BMD Hub website will serve as a valuable resource in achieving this objective.

The BMD Hub was introduced through a webinar for healthcare professional and pharmaceutical industry communities.

The webinar for patients, carers, and families has been postponed and will soon be rescheduled. The date of the event will be communicated soon, please register here and we’ll be in touch with you shortly.

This is a project coordinated by the John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Edgewise Therapeutics, and collaborating with UK patient organisations with an interest in dystrophinopathies.