The MND Register of England, Wales and Northern Ireland ( ‘the MND Register’ ) is a research study funded by the MND Association.
The study is led by Professor Ammar Al-Chalabi at King’s College London and by Professor Kevin Talbot at Oxford University. It will collect information about every person living with MND.
Motor neuron 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 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.
At the core of the MND Register is a research database. The project is progressing well, the database has been built and development of the website is underway. More information is available in the latest issue of the newsletter.
We are grateful for the support of the Betty Messenger Charitable Foundation in funding this project.