Scots charity announces ‘historic’ investment in MND clinical drug trial

A charity has announced a “historic” £2 million investment in what is said to be the UK’s biggest ever motor neurone disease (MND) clinical drug trial.

MND Scotland has also entered into a partnership with the MND Association of England, Wales and Northern Ireland, which is committing an additional £500,000 to bring the total investment to £2.5 million.

The “pioneering” MND-SMART trial is designed to speed up the search for new and effective medicines that can stop, slow or reverse the progression of MND, a rapidly progressing terminal illness which stops the signals from the brain reaching the muscles.

This can cause people to lose the ability to walk, talk, eat and drink, and eventually breathe unaided.

Average life expectancy is just 18 months from diagnosis and there is currently no cure or effective treatment.

Sufferers have included the late rugby star Doddie Weir, who died last November aged 52 after a six-year battle with MND.

Dr Jane Haley (pictured), director of research for MND Scotland, said: “We are delighted to be announcing a historic £2 million investment in the MND-SMART clinical trial, and to be partnering with the MND Association to deliver a further £500,000.

“This is the largest single research investment MND Scotland has ever made and will help drive the next phase of this pioneering trial, ensuring equitable access to a clinical trial for people with MND.

“None of this would be possible if not for our incredible fundraisers, volunteers and donors who make our work possible every day. Together, we will make time count.”

MND Scotland is the foundational funder of the clinical trial, which started recruiting in February 2020, as a result of the charity’s initial £1.5 million investment.

The trial allows multiple drug treatments to be tested at the same time, speeding up progress and reducing the number of people with MND who would be assigned to a “placebo” group.

It has started with “repurposed” drugs which are already approved for use in other conditions.

The trial, designed to run continuously for years to come, is based at the Euan MacDonald Centre for MND Research at the University of Edinburgh and is open to the vast majority of people living with MND across the UK.

More than 500 participants have been recruited at trial sites across Scotland and the rest of the UK, in conjunction with the NHS.

Professor Suvankar Pal, MND-SMART co-lead, said: “MND-SMART has already transformed the MND clinical trial landscape in the UK; so far more than 500 people with MND across Scotland and the rest of the UK have given up their time to take part in this vital research to identify potential new treatments.

“I’d like to thank each and every one of them, as well as the team of researchers and clinicians who continue to make this important research happen.”

Anyone currently living with MND who would like to join the MND-SMART clinical trial, can visit for more information.

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