Cathy Turner, Project Manager for DMD Care UK at the John Walton Muscular Dystrophy Research Center at Newcastle University, discusses the Duchenne Education for Care and Research Initiative (DECRI).
DMD is a rare genetic disorder due to mutations in the dystrophin gene that leads to progressive muscle wasting. DMD occurs primarily in males, though in rare cases may affect females. The symptoms of DMD include progressive atrophy of both skeletal and heart muscle. Early signs may include delayed ability to sit, stand, or walk and difficulties learning to speak. Muscle weakness is usually noticeable in early childhood. DMD is caused by genetic mutations in the DMD gene.
DECRI is an educational program comprised of two main focuses. Through the collaboration of DMD Care UK and Duchenne UK, the goal is to improve and integrate the standards of care for DMD throughout the United Kingdom.
The first component of the initiative is the translation of international standards of care into a practical and implementable set of guidelines for various areas of care in the UK. These guidelines would then be implemented widely within clinics across the country. The second component is the DMD Hub, a project that is working to expand clinical trial capacity for DMD in the UK. This is done by upscaling clinical trial sites and educating the centers on clincal trial best practices.
The program has been proposed for a January 2025 start date. Programs will include educational training modules available online as well as in-person workshops, both of which would be accredited. The ultimate goals are to standardize the care guidelines and provide access to education and training for clinicians to be suited for the delivery of such care.
Following hopeful success with the program in the UK, expansion into other countries are included in the next steps.
To learn more about rare musculoskeletal conditions, visit https://checkrare.com/diseases/musculoskeletal-diseases/
