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WED 225 Changing epidemiology of motor neurone disease in scotland
  1. Leighton Danielle1,2,3,
  2. Chandran Siddharthan1,2,3,
  3. Consortium CARE-MND1
  1. 1Clinical Audit Research and Evaluation for Motor Neurone Disease, UK
  2. 2Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh
  3. 3Centre for Clinical Brain Sciences, University of Edinburgh


Clinical Audit Research and Evaluation for Motor Neurone Disease (CARE-MND) (formerly the Scottish MND Register) is an electronic platform for prospective, population-based research in Scotland. We present the results of recent epidemiological analyses.

Capture-recapture methods were adopted to determine incidence of MND in 2015–2016: 1) notifications via CARE-MND, 2) Information Services Division (ISD) data i) hospital admissions, ii) death data, iii) riluzole prescriptions.

Crude prevalence of MND in Scotland is 7.61–7.64/100,000 of the population. Direct age standardised incidence in 2015 was 3.42/100,000 (95% CI: 2.99 to 3.91); in 2016, 2.89/100,000 (95% CI: 2.50 to 3.34). Using maximum likelihood estimates, coverage of the CARE-MND platform was 99.6% (2015) and 98.1% (2016). In view of high coverage, CARE-MND estimates alone will be presented for 2017.

Previous Scottish MND Register capture-recapture annual incidence estimates were 2.32/100,000 (95% CI: 2.26 to 2.37) in 1989–1998 (direct standardised). Our data suggest a changing landscape of MND in Scotland, with a rise in incidence by 36%. This could be attributed to improved neurological services in Scotland. Incidence is also 67% higher than Northern European estimates, which perhaps reflects our robust ascertainment methods. However, further work using population CARE-MND data aims to determine if genetic or environmental variables account for these findings.

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