MND Register of England, Wales and Northern Ireland

Collecting information about every person living with MND

Motor neurone disease (MND) affects about 5000 people in the UK at any one time, but the true figure is not known as there is no single source of information about who is affected. The purpose of the MND Register is to create a database to collect and store information about every person with MND in England, Wales and Northern Ireland. The information will help plan the care for people living with MND and tell researchers more about what might be causing the disease.

What does taking part involve?

You will be asked to provide your name, date of birth, hospital number, NHS number and post code of residence. This information will be confirmed with your GP. Further information will be collected by a research worker from your clinical notes, and stored in a secure database.

You can find out more here.

Study location

You can take part in the study regardless of your location (as long as it is within England, Wales, or Northern Ireland).

Who can take part?

People living with MND in England, Wales or Northern Ireland.

How do I take part?

If you have access to the internet you can take part via the website at to upload and view your information at any time. Alternatively, please enquire with your MND Care centre or neurologist.

Contact details

If you would like assistance you can contact the Register project manager at

More information

Watch our video and find out more about the MND Register


This project is funded by the MND Association, thanks to the support of Betty Messenger Charitable Foundation and a family trust that wishes to stay anonymous.

Expiry date: N/A

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262