Why do we need the MND Register?

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 Charitable Foundation and a family trust that wishes to remain anonymous, 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.Read More »

Focus on the research presented in posters in Dublin

Over 100 talks were given at this month’s International Symposium on ALS/MND in Dublin. There were also over 450 posters of research being presented too. Time in the conference programme was allocated on Wednesday and Thursday evening (day 1 and day 2 of the 3 day conference) to visit the posters – you might think that scheduled at the end of the day they would be less well attended – but not a bit of it! It was an extremely loud and buzzy part of the conference.


Below is a brief round-up of some of the posters that caught my eye.Read More »

The MND Register of England, Wales and Northern Ireland

What is the MND Register?

The MND Register is a major five year project that aims to collect and store information about every person living with MND in England, Wales and Northern Ireland. It is led by world-class MND researchers Prof Ammar Al-Chalabi and Prof Kevin Talbot, at a cost of £400,500 (our grant reference: 926-794).

Why is it important?

MND is believed to affect 5,000 people in the UK at any one time, however the true figure is not known as there is currently no way of recording this information. The register aims to provide us with the true number of people living with MND in the UK.

The information collected will answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people. The register will connect people with MND to researchers, including those conducting clinical trials, and will provide valuable information to guide the future development of care services.

Print

How will information be collected and used?

The register will be advertised nationally to all people with MND and related healthcare professionals. People with MND will be provided with detailed information about the register, and after some time for consideration, they can agree to take part. Their information will be recorded onto a secure database, either by a healthcare professional, or by the person with MND themselves through a register website (this will then be checked by a healthcare professional).Read More »