Shaping the Future: Top Research Priorities Chosen by the MDI Community

Last November, we emailed everyone on our dataset asking them to prioritise a list of research themes. The survey was also handed out at the MDI conference. Thank you to everyone who took the time to respond.  Below is a graph showing the ranking of participants priorities. The top three preferences were Health and Wellbeing Management (e.g. example exercise/fatigue/pain/psychology wellbeing); Care pathways for neuromuscular conditions; and Lab based scientific research.  We will use this to guide our future research collaborations and our research strategy 2026 - 2028.

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New Resources & Updates for Myotonic Dystrophy, Beckers and Duchenne muscular dystrophies

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Children’s and Young People’s Research Advisory Group