Ontology type: schema:ScholarlyArticle
2019-04
AUTHORSDanielle J. Leighton, Judith Newton, Laura J. Stephenson, Shuna Colville, Richard Davenport, George Gorrie, Ian Morrison, Robert Swingler, Siddharthan Chandran, Suvankar Pal, on behalf of the CARE-MND Consortium
ABSTRACTOBJECTIVES: 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. More... »
PAGES817-825
http://scigraph.springernature.com/pub.10.1007/s00415-019-09190-7
DOIhttp://dx.doi.org/10.1007/s00415-019-09190-7
DIMENSIONShttps://app.dimensions.ai/details/publication/pub.1112381143
PUBMEDhttps://www.ncbi.nlm.nih.gov/pubmed/30805795
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