First person starts new MND drug trial

The centre is at the Anne Rowling Regenerative Neurology Clinic, a charitable University of Edinburgh clinical research facility, and the first participants have now been enrolled and are receiving potential treatments.

The ground-breaking trial, which aims to find medicines to slow, stop or reverse the progression of MND, is part-funded by a £1.5 million investment from MND Scotland, thanks to the fantastic support of our family of fundraisers.

Since the trial launched in January 2020, over 1,000 people across the UK have registered their interest to take part, and additional research teams across the UK have expressed their interest in becoming an MND-SMART trial centre.

Alan Gray, who was diagnosed with the terminal disease three years ago, is the first person to begin the trial.

Alan said: “It’s a real shock when you’re diagnosed with MND and you sort of assume in the 21st century that when you receive a diagnosis there will be treatments available.

“This is a huge step in the right direction. I feel very privileged to be an early participant in the trial, and am so thankful to all of the researchers, doctors and fundraisers who’ve gotten us to this stage.

“MND-SMART is great because almost everyone in Scotland can access the trial. My experience with the trial team was fantastic – they are very organised and professional. I’m excited to have started treatment, and it will be good to see even more centres opening across Scotland and the rest of the UK this year.”

Alan’s wife Beverley said: “I’m delighted and overwhelmed that Alan’s got this opportunity. It’s the start of something big. It might not happen in our generation but it will certainly make a difference for generations to come.”

The team at the Euan MacDonald Centre for MND Research are working hard with teams across the UK to open the other 11 trial sites. The centres that will be opening are in Aberdeen, Birmingham, Cambridge, Dundee, East London, Glasgow, Inverness, Irvine, Newcastle, Salford and Southampton.

The opening of these centres will be announced in the coming months, and it is expected more trial centres will be added to the existing list of 12 very soon. When a new trial centre opens in your area, the local team will contact you if you have registered your interest, to find out if you still wish to take part.

You can find further information on the trial, including how to register interest in joining MND-SMART, at www.mnd-smart.org.

Photos by University of Edinburgh: First patient Alan Gray and his wife Beverley alongside Director of MND-SMART Clinical Trial Professor Siddharthan Chandran and MND Nurse Consultant, Judy Newton. 

About MND-SMART

The platform, MND-SMART, is a UK-wide trial which aims to find treatments that can slow, stop or reverse progression of the terminal disease.

While typical clinical trials focus on a single drug, MND-SMART will allow more than one treatment to be tested at a time, giving patients a higher chance of receiving an active treatment, rather than a placebo.

The clinical trial is designed to be adaptive so that the researchers can modify their approach according to emerging results. New drugs can be added once the trial has started, while medicines that prove ineffective can be dropped.

Initially researchers will test drugs that are already licensed for use in other conditions to check whether they offer any benefit for people with MND.

The project, which is being led by researchers at the Euan MacDonald Centre at the University of Edinburgh, is funded by MND Scotland, My Name’5 Doddie Foundation and the Euan MacDonald Centre for MND Research.