Motor neurone disease patients invited onto landmark clinical trial

People with motor neurone disease (MND) are being invited to take part in UK-wide clinical trial designed to find new treatments for the condition.

The MND-SMART trial is inviting hundreds of MND patients in the hope to find new treatments that can slow, stop or even reverse the disease’s progression.

MND-SMART is different to other clinical trials, which typically focus on a single drug which is tested in patients against those taking a placebo. MND-SMART however will allow more than one treatment to be tested against a shared placebo group, meaning patients will have a higher likelihood of receiving an active treatment.

In this way, the trial has been designed to include as many people with the condition as possible, regardless of how MND or current treatments affect them.

More so, MND-SMART has been designed so that as the trial goes on, researchers can change their approach as results come in, allowing them to include new drugs and drop medicines that are proven to be ineffective.

Researchers will initially test drugs that are already licensed for other conditions to assess if they offer benefits for MND.

Repurposing existing drugs can avoid the lengthy approval processes that come with new drugs, meaning medications could become available sooner for people with MND through the NHS.

Motor neurone disease (MND), also known as amyotrophic lateral sclerosis or ALS, is a progressive condition that causes muscle to waste away.

It occurs when nerve cells called motor neurons, which send messages from the brain and spinal cord to the body’s muscles, stop working properly.

Over 1,500 people are diagnosed in the UK with MND every year. With no cure, half of people with the condition die within two years of diagnosis.

The trial has been designed by both patients and clinical trial experts across the UK, including specialists from the Euan MacDonald Centre for MND Research at the University of Edinburgh, University College London and the University of Warwick.

Euan MacDonald, who is living with MND and is the co-founder of the Euan MacDonald Centre for MND Research with his father Donald, said: “This is the result of 10 years of hard work and collaboration and we are thankful to those involved. Clinical trials like this provide hope that people around the world with MND will one day have access to safe and effective treatments.”

Dr Suvankar Pal, neurologist and MND-SMART co-investigator, said: “We are extremely grateful to the people with MND who have helped us design the trial and we believe their involvement will mean far more people will be able to take part.

“Listening to people with MND means we have developed MND-SMART to have very few exclusion criteria. We have also included the option of video calls to reduce the number of times people have to make the tiring journey to a clinic.”

People with MND are invited to register interest in the trial at www.MND-SMART.org The first participants will be seen in Edinburgh with other clinics across the UK joining during 2020.