The MND Population Register

The MND Population Register for England, Wales and Northern Ireland aims to collect information about every person with MND in the UK. Having accurate, complete information about who has MND is important because:

  • we can work out how the disease is changing over time
  • we can check if resources are concentrated in areas with lots of people with MND
  • geographical risk factors can be analysed at a country level
  • information about disease progression will be more accurate and applicable to all people with MND.

Your information will be stored securely on computers owned by King’s College London and Oxford University. Your personal information will be encrypted when it is entered on to the website and will only be viewed by people within the MND Register team and your care team.

We are getting information from multiple sources to ensure that we include everyone in the Register. The information you enter on to the website will directly contribute to the Register research project.

For more information and to sign up to the register visit our website  and self-register.

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