Keele researchers investigating scale of neuromuscular conditions across the UK

A research team led by Keele is working with a national charity to understand more about how prevalent neuromuscular conditions are across the UK, to ensure that more people are getting the support that they need. 

The team led by Professor Heidi Fuller, Head of the School of Allied Health Professions and Pharmacy at Keele, has received a grant from Muscular Dystrophy UK for a new two-year study looking at how many people in the UK are affected by conditions like muscular dystrophy, to help make care more accessible to more people. 

Previous research funded by the charity and published in 2022 estimated that there were around 110,000 people living with a neuromuscular condition in the UK, an increase compared to the previous figure of 70,000. 

But further analysis has since revealed that more adults and children could be affected by these conditions than previously estimated, meaning many could be missing out on vital information and support. 

The team aim to tackle this by analysing anonymous NHS health records from millions of people, building a picture of how many people are diagnosed with neuromuscular conditions each year, as well as how this has changed over the past twenty years, and any differences between different regions and groups of people. 

The goal of this analysis is to show not only how many people currently live with these conditions to help ensure they get the support they need, but also to help the charity and the NHS plan for the future and help to meet demand. 

Professor Fuller said: "We are incredibly grateful to Muscular Dystrophy UK for supporting this research. The findings will help ensure that people living with muscle wasting conditions are visible in national planning and that future decisions about care, research and access to emerging treatments are informed by the best possible evidence.” 

Dr Kate Adcock, Director of Research and Innovation at Muscular Dystrophy UK, added: "We are delighted to be funding this important study, led by Professor Heidi Fuller at Keele University, to provide the clearest and most up-to-date picture yet of the number of people living with muscle wasting conditions across the UK.  

"As more people are living longer with these conditions, understanding the true scale of the community is essential. The findings will help shape future research, services and treatments, ensuring that people with muscle-wasting conditions can access the care and support they need."