Discover
We lead national projects that build a clearer picture of MND, how it develops, how it progresses, and how it affects people’s lives. Programmes like the MND Register and Join MND Research turn what people living with MND share with us into data that guides both future research and everyday care.
MND Register
The MND Register aims to build a centralised database of patients with MND. 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 over time. This comprehensive understanding is crucial in the search for new treatments for MND.
ALS Biobanking Study
The ALS Biobanking Study collects blood, plasma and other samples from people with MND at five hubs across the UK, University College London, Oxford, King’s College London, Sheffield and Edinburgh, building a shared resource that lets researchers study the disease at a molecular level and develop better ways to track it.
SHERPA & PROMS
SHERPA turns what people with MND tell us about their symptoms, quality of life and daily experience, through patient-reported outcome measures (PROMs), into evidence researchers can actually use. It analyses and combines data with biological and genetic information, so it can inform MND scientific research,
Join MND Research
Join MND Research lets people with MND contribute directly to research from home. This lets patients answer research questionnaires and request a remote blood-sampling kit, with feedback on how their contribution is used, and no need to travel to take part. This makes research more accessible for patients.
