Creating a MND register to record information on those affected by MND.
Principal Investigators: Prof Ammar Al-Chalabi and Prof Kevin Talbot
Lead Institutions: King's College London and University of Oxford
MND Association Funding: £638,968
Funding dates: January 2022 - June 2025
*Supported by the Betty Messenger Charitable Foundation and the William Brake Foundation.
About the project
MND affects around 5,000 people in the UK at any one time, but the true figure is not known. The MND Register aims to capture this information across England, Wales and Northern Ireland. The number of people living with MND could give important clues to the cause of the disease and identify gene-environment interactions and give us an accurate number of how many people within the UK are affected to help co-ordinate better care.
What could this mean for MND research?
Establishing a register to record information on those affected with MND will help to provide researchers and healthcare professionals with an organised way to find out more information about the incidence of MND in England, Wales and Northern Ireland. The records will also allow researchers to identify potential environmental and lifestyle factors that may be linked to the development of MND. It may enable healthcare professionals to investigate any gaps in support services across these countries and coordinate better care and support for people with MND.
"The MND Register is now delivering high quality data which will greatly inform our understanding of the MND landscape in the UK. We are now poised to take things to the next level by aligning with other research studies funded by the MND Association."
Prof Kevin Talbot
Resources
Take part in this research
This research study is currently recruiting participants. Click the button below to find out more about the study and if you are eligible to take part.
Project codes: 965-794 (King's) and 966-794 (Oxford)
