Changing epidemiology of motor neurone disease in Scotland

, Danielle J. Leighton, Judith Newton, Laura J. Stephenson, Shuna Colville, Richard Davenport, George Gorrie, Ian Morrison, Robert Swingler, Siddharthan Chandran, Suvankar Pal (Lead / Corresponding author)

    Research output: Contribution to journalArticlepeer-review

    32 Citations (Scopus)


    Objectives: Scotland benefits from an integrated national healthcare team for motor neurone disease (MND) and a tradition of rich clinical data capture using the Scottish MND Register (launched in 1989; one of the first national registers). The Scottish register was re-launched in 2015 as Clinical Audit Research and Evaluation of MND (CARE-MND), an electronic platform for prospective, population-based research. We aimed to determine if incidence of MND is changing over time.

    Methods: Capture-recapture methods determined the incidence of MND in 2015-2016. Incidence rates for 2015-2016 and 1989-1998 were direct age and sex standardised to allow time-period comparison. Phenotypic characteristics and socioeconomic status of the cohort are described.

    Results: Coverage of the CARE-MND platform was 99%. Crude incidence in the 2015-2017 period was 3.83/100,000 person-years (95% CI 3.53-4.14). Direct age-standardised incidence in 2015 was 3.42/100,000 (95% CI 2.99-3.91); in 2016, it was 2.89/100,000 (95% CI 2.50-3.34). The 1989-1998 direct standardised annual incidence estimate was 2.32/100,000 (95% CI 2.26-2.37). 2015-2016 standardised incidence was 66.9% higher than Northern European estimates. Socioeconomic status was not associated with MND.

    Conclusions: Our data show a changing landscape of MND in Scotland, with a rise in incidence by 36.0% over a 25-year period. This is likely attributable to ascertainment in the context of improved neurological services in Scotland. Our data suggest that CARE-MND is a reliable national resource and findings can be extrapolated to the other Northern European populations.

    Original languageEnglish
    Pages (from-to)817-825
    Number of pages9
    JournalJournal of Neurology
    Issue number4
    Early online date25 Feb 2019
    Publication statusPublished - Apr 2019


    • Epidemiology
    • Motor neurone disease
    • Amyotrophic lateral sclerosis

    ASJC Scopus subject areas

    • Clinical Neurology
    • Neurology


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