RESEARCH


EXPERTS-ALS recruiting now


EXPERTS-ALS (The EXPErimental medicine Route To Success in ALS) is an innovative, experimental medicine programme, designed to identify potential treatments for MND more quickly.


It is a flagship project of the UK MND Research Institute (UK MNDRI), led by Professor Martin Turner at the University of Oxford and UK MNDRI co-director Professor Chris McDermott at the University of Sheffield.


It’s now open at eight centres, with more due to open this year. The first participant came onboard in November 2024 and recruitment is still open now.


The platform will test three drugs to start with. These are all existing drugs that are currently being used to treat other diseases: metformin, nifedipine and ropinirole.


Above: Professor Martin Turner Right: Professor Chris McDermott


Currently, drugs are put forward for clinical trials based on research done in the laboratory and have not been tested in people living with MND. This is one reason for the low success rate of clinical trials in MND to date. However, the EXPERTS-ALS platform will screen drugs in eligible people living with MND, looking for early signals of benefit.


A ‘go’ or ‘no-go’ decision can be reached within just a few months and the most promising drugs prioritised for testing in larger phase 3 clinical trials, with a higher chance of a positive outcome.


To learn more about signing up to this platform trial, please see the dedicated page on our website.


MND-SMART marks fiveyears of cutting-edge research


EXPERTS-ALS isn’t the only research project testing existing drugs as potential treatments for MND. In fact, it’s following in the footsteps of MND-SMART, a project that’s now in its fifth year.


Over 900 people living with MND have already taken part in the trial across 22 UK sites. Their incredible commitment has already helped rule out the memory- loss drug memantine and the anti - depressant trazodone as potential MND treatments, early into testing. This has opened up the opportunity to test other drugs including amantadine, which is currently used to treat Parkinson’s, multiple sclerosis and influenza.


Eating, drinking, enjoying,


connecting In January, Kirsty Harrison (right) started a three- year fellowship looking at developing a new way to support people living with MND with problems around eating and drinking. We asked her to reflect on her first six months.


“We held the first Project Advisory Group at the start of May. I’m thrilled to have such a great team of people supporting this project, including Ann Franklin, who lives with MND.


The focus in my first year is a systematic review, looking at all the research published in this area. It’s essential we build on existing research so that money isn’t wasted duplicating work. There hasn’t been much research into eating and drinking in MND. So I’m reviewing research into other conditions such as Parkinsons and Huntington’s too.


I think the impact of MND on eating and drinking is underestimated. Working with people with MND and their carers has shown me how it affects people’s everyday lives. Eating and drinking isn’t just about getting enough food and fluids. It’s about enjoyment and connecting with friends and family.


That can become a challenge if you need to give eating and drinking 100% of your attention. Going out for a meal can be hard if you are on a special diet or need thickened drinks. And almost everyone I’ve spoken with worries about choking during their meals.


Thanks to your donations, we’ve committed £500,000 of funding to MND- SMART, meaning more trial sites will be able to open this year. With your help, big steps are being taken in our mission to find a drug that could benefit people living with MND.


I would like to say a massive thank you to all the MND Association supporters who have helped fund my research. Their efforts are helping to develop resources intended to make eating and drinking more manageable and enjoyable for people living with MND.”


Every donation you make could help fund MND research like this. Click here to give now.


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