“I’m over the moon” – MND patient thrilled at launch of new ground-breaking clinical trial

By Calum Brown

A UK-wide trial has been launched in an attempt to treat Motor Neurone Disease, with those affected by the disease eligible to participate in a ground-breaking clinical pilot.

The trial is named MND-SMART, which stands for Motor Neurone Disease – Systematic Multi-arm Adaptive Randomisation Trial, and will allow hundreds of people, including rugby legend Doddie Weir, to take part in tests which have the potential to eradicate the rapidly progressing terminal illness.

It will test how effective two different drugs are at slowing down the development of symptoms in people with MND. 

Those taking part will be given one of two active drugs, or a dummy drug – a placebo. They will be asked to take the medicine once a day. The medicine will be in a liquid form which will make it as easy as possible for people to swallow.

Experts will review how well the medicines are working whilst people are still taking the study drugs, rather than just at the end. Simply, if a medicine does not appear to be performing well then participants will be asked to stop taking it. 

During the trial, neither the participant nor the doctor or nurse treating them will know which medicine they are taking, which ensures that the results of the trial are unbiased.

Craig Watson, the Communications Officer at MND Scotland, believes that MND-SMART is innovative and ground-breaking for clinical trials. 

He commented: “The trial is ground-breaking in that, unlike typical clinical trials which test a single treatment, MND-SMART’s innovative multi-arm design allows for multiple drugs to be tested at the same time against one placebo group. 

“The fact that there are multiple treatments means that there’s a higher chance for participants to be placed on an active drug, rather than the placebo. The trial is also innovative in that the drugs being tested are already approved for use in other conditions, namely Alzheimer’s and the treatment of depression-anxiety. 

“The drugs were carefully selected because scientists believe they could be of positive impact in MND. This repurposing of drugs also means that this cuts down the time for any effective treatments to be licensed for use in MND, as they are already approved for use in humans.”

MND-SMART is led by the Euan MacDonald Centre for MND Research, based at The University of Edinburgh (UoE), which is where the first trial centre will open.

The Anne Rowling Regenerative Neurology Clinic at the UoE will welcome participants in the coming weeks and months, whilst several UK cities including Glasgow, Newcastle and London hope to open further trial centres throughout 2020.

David Gardiner, who lives in West Lothian, is one of over 400 people in Scotland who has been diagnosed with MND.

The 58-year-old’s life has dramatically changed because of the disease, but he’s still hopeful that a cure can be found, and is delighted to be participating in MND-SMART at the Edinburgh trial centre at the end of this month.

He said: “I’m over the moon. They are hopeful that they can find the drug to either stop it where it is now, or it could completely reverse the disease.”

The former youth football coach has been living with MND for over three years now, after being diagnosed in 2016, and the illness is starting to take its toll on his body.

“I still have muscle in my left leg but I’m struggling to get off my wheelchair now. I’ve nearly lost function of my left hand and arm. My right arm is still good as is my right hand. I’m starting to get some cramps in my right hand which means it’s progressing.

“My breathing is still good though, as is my voice. I do arm exercises at night with my carers and they also work my legs in the morning. 

“Even if the drugs can stop my MND where it is at the moment, I would be more than delighted.”

Further information on MND can be found at – https://www.mnd-smart.org/about/about-mnd-smart

To donate, follow this link – https://www.mndscotland.org.uk/fundraising/make-a-donation/

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