New MND incidence and prevalence study published

people on a street

Mar 2019: The study used data from the CARE-MND platform to investigate how common MND is in Scotland. 

CARE-MND is a national platform that empowers people living with MND in Scotland to directly influence the provision of clinical care and research. With their consent, the platform holds data on people diagnosed with MND in Scotland and researchers can review anonymised information to discover more about the condition.  CARE-MND is a joint project between the Euan MacDonald Centre, MND Scotland and the Anne Rowling Clinic. 

A recent study used the data from CARE-MND to find out how common MND is in Scotland. Knowing this information is essential for planning regional and national health services. 

The researchers investigated the number of people newly diagnosed with MND each year (incidence), and the number of people living with MND in Scotland at any one time (prevalence) in the years 2015-2017.  This kind of study is called an ‘epidemiological’ study.

The researchers confirmed that approximately 200 people are newly diagnosed in Scotland each year and approximately 400 people are living with MND in Scotland at any one time. They also found that MND is not associated with social deprivation. Interestingly, the number of people being diagnosed with MND in Scotland has increased when compared with 20 years ago. Scotland’s incidence of MND is also higher than that of other European countries. 

The researchers believe that the main reason for this increase is that we have exceptionally good MND care in Scotland, with a recent doubling of the number of MND Clinical Nurse/Allied Health Specialists.  We have therefore been able to identify and record people with MND better.  We are also now more aware of the different types of MND, and we include these different types in our numbers.

Work is ongoing to explore other reasons which might explain the increase, such as environmental and genetic factors. Theories include improved treatment of other diseases such as heart disease and genetic variations which may be more common in Scotland. 

The study was funded by the Euan MacDonald Centre, MND Scotland, the Chief Scientist Office and the MND Association. It was published in the Journal of Neurology.


Related links

Read the scientific article: Changing epidemiology of motor neurone disease in Scotland

Research case studies: MND Register

This article was published on: Wednesday, March 27, 2019