Why is the MND Register so important?
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.