27 May 2025 News
Information shared by people with motor neurone disease (MND) through the MND Register is supporting the global effort to accelerate MND research and find causes, treatments and a cure for the disease.
The MND Register, funded by the MND Association and developed at King’s College, London and University of Oxford, collects and stores comprehensive information about every person with MND in England, Wales, and Northern Ireland who haven’t opted out of the project. This data, collected through routine clinic visits, is used to learn more about the disease, plan care, and support research into its causes and potential treatments.
All MND care centres and networks in England, Wales and Northern Ireland are now collecting data to support the MND Register, and the information shared by people with MND is already being used by MND researchers.
Data from the MND Register has been vital my research. Using the detailed responses from participants, we have been able to use advanced statistical methods to help identify environmental factors which may increase the risk of developing the disease. We believe environmental factors likely have a role to play in disease onset and resources such as the MND Register allow us to study these factors in depth to try to work out to what extent they may contribute. We cannot do this without initiatives like the MND Register.
Jaimee Kennedy, Brain Bank Research Technician and Neuroscience PhD Student at King's College London, is investigating the potential role of strenuous physical activity on MND onset, progression and brain pathology.
The Register is led by Professor Ammar Al-Chalabi at King's College London and Professor Kevin Talbot at Oxford University and is the first comprehensive source of information collected by healthcare professionals about people with MND. Once fully integrated into the UK MND Research Institute, the hope is that this will become the key single source of information about MND in England, Wales and Northern Ireland.
We’re delighted researchers from around the world are able to use this vital resource to investigate different factors associated with MND. The project was developed in support of our shared and determined goal of finding treatments and ultimately a cure for this devastating disease.
Dr Sophie Nyberg, Research Programmes and Partnerships Manager at the MND Association
More than 11,000 people with MND from over 50 sites have now shared their information with the MND Register, with the hope that this number will continue to increase with all care centres and networks now involved in the data collection.
I hope researchers can use data from the MND Register to better focus their study and identify any factors that may be linked to the development of MND. I am proud to be involved in this. The MND Register also means everyone with MND who wants to can be involved in research efforts to improves lives for people with MND. It’s vital too that healthcare professionals and researchers have access to information like this for their work.
Ellen Wang is living with MND
It’s so important to me to help in the fight for a cure for MND. Participating in the MND Register is one way I can do my bit for research and to help others.
Patrick Darling is living with MND
Thank you to everyone who has joined the register and to everyone who does so in future.
You can learn more about the MND Register and what it means for people with MND on this dedicated webpage. Insights into the data will be also shown here with the first papers being published next month in June.