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. 2019 Apr;266(4):817-825.
doi: 10.1007/s00415-019-09190-7. Epub 2019 Feb 25.

Changing epidemiology of motor neurone disease in Scotland

Danielle J Leighton  1   2   3 , Judith Newton  1   2   3 , Laura J Stephenson  2 , Shuna Colville  1   2   3 , Richard Davenport  3   4 , George Gorrie  2   5 , Ian Morrison  6 , Robert Swingler  1   2 , Siddharthan Chandran  1   2   3   4 , Suvankar Pal  7   8   9   10 ; CARE-MND Consortium
Affiliations

Changing epidemiology of motor neurone disease in Scotland

Danielle J Leighton et al. J Neurol. 2019 Apr.

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.

Keywords: Amyotrophic lateral sclerosis; Epidemiology; Motor neurone disease.

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