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 journalArticle

    1 Citation (Scopus)

    Abstract

    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
    Volume266
    Issue number4
    Early online date25 Feb 2019
    DOIs
    Publication statusPublished - Apr 2019

    Fingerprint

    Motor Neuron Disease
    Scotland
    Epidemiology
    Incidence
    Clinical Audit
    Social Class
    Patient Care Team
    Population

    Keywords

    • Epidemiology
    • Motor neurone disease
    • Amyotrophic lateral sclerosis

    Cite this

    , Leighton, D. J., Newton, J., Stephenson, L. J., Colville, S., Davenport, R., ... Pal, S. (2019). Changing epidemiology of motor neurone disease in Scotland. Journal of Neurology, 266(4), 817-825. https://doi.org/10.1007/s00415-019-09190-7
    Leighton, Danielle J. ; Newton, Judith ; Stephenson, Laura J. ; Colville, Shuna ; Davenport, Richard ; Gorrie, George ; Morrison, Ian ; Swingler, Robert ; Chandran, Siddharthan ; Pal, Suvankar. / Changing epidemiology of motor neurone disease in Scotland. In: Journal of Neurology. 2019 ; Vol. 266, No. 4. pp. 817-825.
    @article{7b2e1e911f3442faa576e9806f7cba1b,
    title = "Changing epidemiology of motor neurone disease in Scotland",
    abstract = "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.",
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    author = "Leighton, {Danielle J.} and Judith Newton and Stephenson, {Laura J.} and Shuna Colville and Richard Davenport and George Gorrie and Ian Morrison and Robert Swingler and Siddharthan Chandran and Suvankar Pal",
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    Leighton, DJ, Newton, J, Stephenson, LJ, Colville, S, Davenport, R, Gorrie, G, Morrison, I, Swingler, R & Chandran, S & Pal, S 2019, 'Changing epidemiology of motor neurone disease in Scotland', Journal of Neurology, vol. 266, no. 4, pp. 817-825. https://doi.org/10.1007/s00415-019-09190-7

    Changing epidemiology of motor neurone disease in Scotland. /; Leighton, Danielle J.; Newton, Judith; Stephenson, Laura J.; Colville, Shuna; Davenport, Richard; Gorrie, George; Morrison, Ian; Swingler, Robert; Chandran, Siddharthan; Pal, Suvankar (Lead / Corresponding author).

    In: Journal of Neurology, Vol. 266, No. 4, 04.2019, p. 817-825.

    Research output: Contribution to journalArticle

    TY - JOUR

    T1 - Changing epidemiology of motor neurone disease in Scotland

    AU - Leighton, Danielle J.

    AU - Newton, Judith

    AU - Stephenson, Laura J.

    AU - Colville, Shuna

    AU - Davenport, Richard

    AU - Gorrie, George

    AU - Morrison, Ian

    AU - Swingler, Robert

    AU - Chandran, Siddharthan

    AU - Pal, Suvankar

    PY - 2019/4

    Y1 - 2019/4

    N2 - 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.

    AB - 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.

    KW - Epidemiology

    KW - Motor neurone disease

    KW - Amyotrophic lateral sclerosis

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    DO - 10.1007/s00415-019-09190-7

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    Leighton DJ, Newton J, Stephenson LJ, Colville S, Davenport R et al. Changing epidemiology of motor neurone disease in Scotland. Journal of Neurology. 2019 Apr;266(4):817-825. https://doi.org/10.1007/s00415-019-09190-7