Funding new research to understand the scale of neuromuscular conditions

18 August 2026

How many people in the UK are living with a muscle wasting condition today? We’re funding new research to answer that question and provide the clearest picture yet of the scale of neuromuscular conditions across the UK.

We know that neuromuscular conditions are affecting a growing number of people in the UK. Yet despite advances in diagnosis and treatment, we don’t have an accurate estimate of how many people are currently affected.

As part of our ten-year strategy, we have committed to help speed up and improve the accuracy of diagnosis and to reach everyone with information and support, so no one faces their journey alone. To do this, we first need to understand how many people are living with neuromuscular conditions across England, Wales, Scotland and Northern Ireland.

In February 2022, following a study we funded by Dr Iain Carey, we revealed that there were 110,000 people living with a neuromuscular condition in the UK (compared to an earlier figure of 70,000), but this is now thought to underestimate the number of adults and children affected. 

That’s why, over the next two years, we’re funding a new epidemiology study, led by Professor Heidi Fuller at Keele University in Staffordshire.

What will the study involve?

By analysing anonymous NHS health records from millions of people, Professor Heidi Fuller and her team will build the most comprehensive picture to date of how many people are living with neuromuscular conditions across the UK. 

The two-year study will look at:

• how many people are diagnosed with a neuromuscular condition each year
• how these numbers have changed over the past two decades
• how the numbers differ between regions, age groups and communities

It will also forecast how many people are likely to be living with these conditions over the next ten years. 

How will this help?

Without reliable information, it’s difficult for us to plan and ensure people are getting the support they need. This research will help us to understand how many people in the UK are affected by neuromuscular conditions and to identify any gaps in care.

The findings will support NHS planning, help ensure specialist services are available where they’re needed most, improve access to clinical trials, and prepare health services for the next generation of treatments. 

By understanding the true scale of neuromuscular conditions, we can help ensure that people receive the care and support they need, wherever they live.