Whilst we believe that there are currently around 5,000 adults in the UK living with MND at any one time, the precise figure is not known as there is no single source of information to confirm it. The MND Register of England, Wales and Northern Ireland is set to find a more accurate figure of the true number of people living with the disease. This research study, funded by the MND Association with the support of the Betty Messenger Foundation and an anonymous family trust, is jointly led by Professor Ammar Al-Chalabi at King’s College London and Professor Kevin Talbot at the University of Oxford.
Despite our increasing knowledge of the role that genetics plays in MND, there is strong evidence to suggest that MND is a complex disease that is triggered by a combination of genetic predisposition to the disease and exposure to external environmental influences such as occupational and lifestyle factors.
The MND Register has been set up to collect vital information about people living with MND across England, Wales and Northern Ireland and will provide researchers with a unique resource. This will enable us to understand how many people are living with MND at any one time, whether they live in a certain area, how the disease progresses in different people, and to identify environmental factors that may contribute to a person developing MND. Collecting this information in a single resource will enable us to support the work of MND researchers and improve standards of care, both now and in the future.
Initially, people were invited to take part in the MND Register during their appointment with one of the clinics or MND care centres that are taking part in the project (see above for the location of these sites). We are now pleased to announce that if you do not attend any of these sites, it is possible to join the MND Register via the website https://mndregister.ac.uk .
All data collected as part of the MND Register is anonymised and held to strict NHS standards. Work is currently underway to validate the revised ALS Functional Rating Score (ALSFRS-R) for use on the self-registration website. The ALSFRS-R is a questionnaire administered by a clinician and is used to assess the speed of disease progression. Being able to use this measure on the self-registration website means that we will have as much information as possible to help us understand the who, what, where, when, why and how of MND.
So far, 18 sites are recruiting, with the remaining 15 expected to come online in due course. To date, more than 750 people living with MND have taken part in the MND Register via their clinic or MND Care Centre and 70 via the self-registration website.
Thank you to everyone who has joined the MND Register and to all who will be joining the MND Register in the future. By taking part in this vital research, you are helping us piece together the MND jigsaw.
Alternatively, call the Oxford MND Register team on 01865 234957 or the King’s College MND Register team on 020 7848 5244.