The MND Register of England, Wales and Northern Ireland ('the MND Register') is a research study funded by the MND Association, and led by Professor Ammar Al-Chalabi at King’s College London and Professor Kevin Talbot at University of Oxford. It aims to collect information about every person living with MND.
Motor neurone disease (MND) affects about 5,000 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 the UK.
The information will help plan the care for people living with MND and tell researchers more about what might be causing the disease. For example, counting every person with MND allows us to work out the number of people diagnosed with MND per year, how many people currently have the disease and how this is changing with time. Information such as gender and ethnicity can be used to look for characteristics of people more likely to develop MND.
People with MND can take part in the study via the project website www.mndregister.ac.uk or by selecting the 'Join the MND Register' button below. They may also be invited to take part during an appointment at their MND clinic. (The number of clinics able to recruit people with MND into the Register is increasing all the time.)
We are grateful for the support of the Betty Messenger Charitable Foundation and a family trust that wishes to stay anonymous, enabling us to fund this project.