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Motor Neuron Disease Register for England, Wales and Northern Ireland – an analysis of incidence in England

Research output: Contribution to journalArticlepeer-review

Sarah Martin, Lynn Ossher, Andrea Bredin, Anna Kulka, Neil Pearce, Kevin Talbot, Ammar Al-Chalabi

Original languageEnglish
JournalAmyotrophic lateral sclerosis & frontotemporal degeneration
Accepted/In press16 Aug 2020

King's Authors


Amyotrophic lateral sclerosis (ALS) has is a progressive, neurodegenerative disease with a reported incidence of 1-2/100,000 person-years. It is estimated that there are 5000 people with ALS in the UK at any one time; however the true figure, and geographical distribution, is unknown. In this study we describe the establishment of a population register for England, Wales and Northern Ireland and report estimated incidence.
People with a diagnosis of ALS given by a consultant neurologist and whose postcode of residence is within England, Wales or Northern Ireland were eligible. We defined an area of complete capture, based on tThe catchment area was based on of six data contributors that had been participating since 2016. All centres included in this analysis were in England, and therefore Wales and Northern Ireland are not included in this report. We extracted records based on date of onset of first focal weakness. Crude age- and sex-specific incidence rates were estimated using population census records for the relevant postcodes from Office of National Statistics census data. These rates were standardised to the UK population structure using direct standardisation.
There were 232531 people included in the database with a date of diagnosis between 2017 and 2018, when missing data were imputed there were an estimated 287-301 people. of whom 258 were in the catchment area. The denominator population of the catchment area is 7,251,845 according to 2011 UK census data people according to 2011 UK population census recording. Age- and sex- adjusted incidence for complete cases was 1.5561/100,000 person-years (950% confidence interval 1.58, 1.631.17,2.01), and for imputed datasets was 2.072 /100,000 person-years (95% CI 2.072, 2.073).
We found incidence in this previously unreported area of the UK to be similar to other published estimates. As the MND Register for England, Wales and Northern Ireland grows we will update incidence estimates and report on further analyses.

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