355P A comprehensive education and training programme for healthcare professionals in care and research for Duchenne muscular dystrophy developed from DMD Care UK and the DMD Hub

• Published in: Neuromuscular disorders : NMD 2024-10, Vol.43, p.104441, Article 104441.686
• Main Authors: Turner, C., Geuens, S., Heslop, E., Johnson, A., Straub, V., Guglieri, M.
• Format: Article
• Language: English
• ISSN: 0960-8966
• DOI: 10.1016/j.nmd.2024.07.695

The DMD Hub and DMD Care UK have pioneered the facilitation of clinical research and expert care across the UK for patients with Duchenne muscular dystrophy (DMD) and their families. However, recent work within these two collaborative projects has shown that we now need to address remaining discrepancies in care provision and access to clinical trials across the UK. Key barriers to patients receiving the best quality care and access to research are gaps in awareness and a lack of appropriate levels of understanding about latest standard of care guidelines, a lack of experience of clinical research in DMD and insufficient trial capacity. Knowledge of DMD care requirements is often limited to neuromuscular specialists, whilst multi-disciplinary specialists (such as respiratory, cardiac and emergency) and others responsible for crucial care delivery may be less informed. Expert knowledge and full implementation of harmonised care standards are crucial for the effective delivery of clinical trials and to increase the number of centres able to run them. Because a lack of access to expert care and clinical research carries significant consequences, DMD Care and the DMD Hub have developed a comprehensive, single and reliable source of up-to-date, tailored and accredited training and information for all aspects of DMD care and clinical research. We present here the first phase and plans for next steps of this education and training programme that targets different learning needs – including primary healthcare practitioners, community-based providers and tertiary specialists. Through our programme and the DMD Hub network, we continue to upskill trial sites and so expand capacity for DMD trials in the UK. Working with established clinical networks – including the North Star, we ensure that we have reached across the whole of the UK. Content is delivered online via a learning management system and in person through face-to-face workshops, is accredited and based on the needs identified by the DMD Care and Hub networks. In addition to modules on physical aspects of multi-disciplinary care and on clinical research, we have developed an important and often overlooked component that covers psychosocial care needs including support at diagnosis, the impact of DMD on the central nervous system, screening, interventions and referral pathways. We also provide training and support for clinical trial teams for psychosocial considerations around trial participation. Although th