Abstract

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.