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.

Taking Part

What does taking part involve?

Your data will be collected during your routine hospital appointment this will include your name, date of birth, hospital number, NHS number and post code of residence. Further information will be collected by a healthcare professional from your clinical notes, and stored in a secure database.

You can find out more here.

Who can take part?

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

How can I take part?

Your data will be collected as part of your routine clinic appointment with your consultant neurologist. If you do not wish to have your data collected as part of the MND Register you can opt-out.

If you would like assistance you can contact the Register project manager at [email protected].

Study location

Your data will be collected regardless of your location (as long as it is within England, Wales, or Northern Ireland).


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.