We’re pleased to announce new results from the MND Register showcased at the ENCALS Meeting 2025 in Turin, Italy. The primary objective of the MND Register is to build a centralised database of patients with MND across England, Wales and Northern Ireland. Counting every person with MND allows us to work out the number of people diagnosed with MND per year, how many people currently have the disease and how this is changing with time. It also provides a resource for sharing de-identified data with researchers and collaborators for future research studies. These findings range from a new ALS incidence and prevalence analysis to gender differences, clinical characteristics, and outcomes.

We analysed the incidence and prevalence of ALS in England, Wales and Northern Ireland.

Studies from across Europe consistently show that ALS is more common in men than women. They also show that increasing age, a family history of ALS or dementia and specific genetic changes also increase someone’s risk of the disease.

Population registers, such as the MND Register, are vital tools that provide us with information that can be used to increase our understanding of ALS and improve research. They are databases that contain information about individuals diagnosed with the disease in a particular area. Researchers can use them to understand how many people are diagnosed and how common it is in a population.

In this specific project, we wanted to assess the number of people diagnosed with MND across six different areas in the UK between 2012 and 2021 so that we can better inform future research and healthcare planning. The areas we investigated were Lambeth, Southwark, Lewisham, Oxford, Dartford, and Derby. So, what did we find, and what does it mean?

  • First of all, we observed 329 people diagnosed with ALS between 2012 and 2021 from a population of 1,219,900 people.  The prevalence rate in the study population was around 11.9 per 100,000 people.
  • We also found that men were more likely to be diagnosed with ALS when compared to women. The study included 137 females (41.64%) and 192 males (58.36%).
  • We estimate that around 7,097 people have MND at any one time in England and Wales. This increases to 7,976 people for the entire UK population.
  • The median age at diagnosis was 65.50 years across the six catchment areas. This highlights the disease’s prevalence amongst older adults, whilst also suggesting a substantial number of younger people who are diagnosed with the disease.
  • The age group of 70 to 74 years old had the highest number of people with ALS, with 51 people. While the age group of 90+ has the lowest, with only two people.
  • And lastly, the median age of onset of the disease was 63.77 years, and the peak incidence and prevalence occurred between the ages of 75 and 79 years for both genders.

One strength of the MND Register for England, Wales, and Northern Ireland is its high capture rate. We note that the reported incidence and prevalence are higher than those in many previous studies, which this high capture rate could likely explain. These findings highlight the importance of the MND Register as a vital resource for epidemiological research.

We assessed sex differences in clinical characteristics and outcomes of ALS/MND patients.

Previous research studies have also shown that sex influences the incidence, presentation and outcomes of ALS. We know that men are more likely to develop ALS at a younger age with spinal onset, whilst women are more likely to present with bulbar onset and experience faster decline in function. This highlights the need for diagnostic and therapeutic approaches that are tailored to sex.

We used data from the MND Register (including 10,210 participants) to investigate sex-related differences in ALS over the past decade in the UK. We examined any variations in diagnosis, symptom onset, clinical features, and survival to better understand how the disease differs between men and women so that we can find more personalised management strategies. So, what did we see, and what does it mean?

  • Of all participants, 41.6% were female and 58.4% were male.
  • We analysed the age of onset and found a significant gender difference, with women more likely to have the onset of disease later. Women were also diagnosed later, but the diagnostic delay was not significantly different.
  • Bulbar onset was more common in females, while males had more limb onset. Women were more likely to report a family history.
  • Women were more likely to undergo gastrostomy, while men had slightly higher respiratory interventions. Both sexes showed similar weight loss trends, and Riluzole use was nearly identical between sex groups.
  • We also found that men had a significantly higher probability of survival from onset to diagnosis.

Overall, we found that sex significantly influences MND presentation, progression and management. These findings highlight the need for clinical practice and research to take these differences into account to improve diagnosis, treatment strategies and therapeutic development for people living with ALS.

We analysed epidemiological insights and survival.

Previous research has also found that ALS has a significant variation in clinical presentation and survival. Key factors, such as age, site of onset, symptoms, and access to interventions, may influence outcomes. In a further research project using the Register, we evaluated survival and how this changes based on varying demographic and clinical factors. So, what did we find, and what does it mean?

  • We found that the median age of symptom onset was 63.2 years, diagnosis was 64.8 and death at 67.9 years.
  • Median survival was 39.04 months from onset and 22.2 months from diagnosis. From onset, survival rates declined, with 93.6% survival at 1 year and 23.9% at 5 years. When we analysed the diagnosis, we found a 70.5% survival at 1 year and a 13.5% survival at 5 years.
  • The median time from onset of symptoms to diagnosis was 1.07 years. Longer delays (longer than 1 year) were linked to more prolonged survival and later death.
  • Patients with PLS were also found to have earlier onset (a median of 147 months) but more prolonged survival than ALS (a median of 51 months).
  • 63.2% of the participants had limb onset, and 27.4% had bulbar onset. Bulbar, respiratory, and generalised onsets showed later onset and diagnosis but short survival, with bulbar onset having the shortest diagnostic delay. Spinal onset had the highest survival, followed by limb onset. Bulbar and respiratory had the poorest outcomes.
  • When we analysed ethnicity, we found that of 5,390 individuals, 65.8% were White British or Other White, followed by 8.1% who were mixed, 2.2% who were Asian, and 1.4% who were African. White British had the latest onset, diagnosis, and death but the shortest survival. African and Asian groups had an earlier onset but longer survival.

Finally, we found that survival outcomes in MND vary significantly by diagnostic subtype, site of onset, ethnicity and diagnostic delay. The results emphasise the importance of early symptom recognition, timely diagnosis and access to treatment in influencing survival.

The MND Register is funded by the MND Association and supported by The Betty Messenger Charitable Foundation and a family trust that wishes to remain anonymous.