Diagnosis of motor neurones disease in the UK

Release date:
25 August 2022

​FOI Reference: FOI/2022/4341

You asked

Please could we make a F.O.I request for data related to the diagnosis of Motor Neurones Disease in the UK between 2017-2022 latest?

We said

​Thank you for your enquiry.

Unfortunately, we do not hold information regarding the diagnosis of motor neuron disease. NHS Digital may be better placed to answer your enquiry. They can be contacted on enquiries@nhsdigital.nhs.uk or by telephone 0300 303 5678

Motor neurone disease deaths

We do however hold motor neurone disease mortality statistics for England and Wales. We are responsible for the production of Mortality data for England and Wales, this is driven by information collected from the death certificate at death registration. National Records Scotland (NRS) and Northern Ireland Statistics and Research Agency (NISRA) are responsible for statistics pertaining to Scotland and Northern Ireland. They can be contacted at foi@nrscotland.gov.uk and info@nisra.gov.uk respectively.

Our mortality data comes from the information collected at death registration. All the conditions mentioned on the death certificate are coded using the International Classification of Diseases, Tenth Revision (ICD-10). From all of these causes an underlying cause of death is selected using ICD-10 coding rules.

The underlying cause of death is defined by WHO as:

  1. the disease or injury that initiated the train of events directly leading to death, or
  2. the circumstances of the accident or violence that produced the fatal injury

The ICD-10 cause code for motor neuron disease is G12.2.

Information on deaths where motor neuron disease is the underlying cause is available as part of our explorable dataset available on our NOMIS webservice

  • Select the geography (England and Wales, regional or by local authority).
  • Select years data is available: 2013 to 2021.
  • Select Age – All ages or five year age bands.
  • Select Gender – Total or Male/Female
  • Select rates – All deaths, rates or percentage of population for example.
  • Select cause of death (ICD10 code search is available) or use G12.2
  • Select format (Excel or CSV for example)

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