Understanding how many people are living with a muscle wasting condition in the UK

We don’t know exactly how many people are living with a muscle wasting condition across the UK. Current estimates, based on a study funded by the charity in 2019, suggested that there are over 110,000 people living with a muscle wasting condition in the UK. However, we now believe this could be an underestimate of the true number. Better diagnosis, improved treatments and longer life expectancy mean that more people are living with muscle wasting conditions than ever before. 

Having accurate information about how many people are affected, where they live and how this is changing over time is essential. This work will provide vital evidence to support our strategy, A World Without Limits – Our Strategy 2025–2035, which sets out an ambitious plan to transform diagnosis, accelerate access to treatments, ensure no one faces their journey alone and that people can live their life to the full.  

By generating robust data on muscle wasting conditions across the UK, this study will help us better understand the scale and distribution of these conditions, identify gaps in care, and advocate for lasting change. The data from the study will help highlight gaps in NHS services and can be used to ensure specialist care is available where it is needed. Without reliable information, it is difficult to plan for the future or make sure that people with muscle wasting conditions receive the care and support they need.

This project will provide the most up-to-date picture of muscle wasting conditions across the UK. 

Using anonymous NHS GP records from millions of people, this study will estimate how many people are living with different muscle wasting conditions, how many people are newly diagnosed each year, and how these numbers have changed over the last 20 years. This will also include examining differences between age groups, regions of the UK and different communities. 

This information will also be used to estimate how many people are likely to be living with a muscle wasting condition over the next ten years. This will give healthcare providers, researchers and patient organisations a clearer understanding of future needs and help them to plan services more effectively. 

People with muscle wasting conditions deserve healthcare that is planned around accurate information. If we don’t know how many people are affected or where they live, it’s difficult to provide the right services, plan specialist care or prepare for new treatments.