Motor neuron disease affects about 5,000 people in the UK at any one time.
However the true figure has not been known as there is no single source of information about who is affected by motor neurone disease (MND). The primary objective of the MND Register is to build a centralised database of patients with MND across England, Wales and Northern Ireland. 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. It also acts as a resource to share de-identified data with researchers and collaborators for future research studies.
Why is the MND Register important?
We have gathered data from over 6,000 people with MND across England, Wales and Northern Ireland. With the support of individuals living with MND, we can make it the key single source of information about MND in the country. And together that means we will improve the lives of people living with MND by helping to plan care, research causes and potential treatments.
Find your nearest MND Clinic
There are a number of clinics and care centres collecting data about people with MND for the MND Register. If you would like more information about the MND Register or, if you’re living with MND and you would like more information about the project, then please contact the MND Register team mndregister@kcl.ac.uk.
