Rugby legend Doddie Weir to join groundbreaking Scottish MND drug trial
A clinical drug trial for Motor Neurone Disease was launched today thanks to a £1.5 million investment from the charity MND Scotland.
Hundreds of people living with motor neurone disease are now being invited to take part in one of the UK’s most comprehensive clinical trials.
Rugby legend Doddie Weir is among those taking part in the trial described by researchers as the biggest development in a generation.
The former Scotland international, whose charity the My Name’5 Doddie Foundation has raised more than £5m for MND research, is calling on “every MND patient in Scotland” to join him.
The MND-Smart programme will trial new drugs, existing drugs and a placebo.
Motor neurone disease sees muscles waste away after a loss of nerve cells that control movement, speech and breathing. There is no effective treatment or cure, and half of the 1,500 people who are diagnosed each year die within 24 months.
MND-Smart, led by a team of researchers based in Edinburgh, may offer some hope.
Currently, over 400 people in Scotland are living with MND and this trial will be open to almost every person in Scotland with the illness.
MND Scotland committed to bringing more MND trials to Scotland in 2020, and by investing £1.5 million this pioneering research is now taking place. This investment accounts for more than half of the charity’s annual turnover, highlighting the importance of the charity’s mission to find a cure.
The project, which is being led by researchers at the Euan MacDonald Centre for MND Research at the University of Edinburgh, has been developed to find effective medicines more quickly. It will include as many people with the condition as possible, regardless of how the disease or current treatments affect them.
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.
This repurposing of existing drugs avoids some of the lengthy approvals processes associated with new drugs and could cut years off the time taken for the medications to become available to people with MND through the NHS.
Lawrence Cowan, Chair of MND Scotland, said “Today is an historic moment in our fightback against Motor Neurone Disease and because of the incredible generosity of our supporters, MND Scotland has invested £1.5 million into MND-SMART.
“MND killed my best friend Gordon Aikman so suddenly, I never got a chance to say a proper goodbye. But I did make a promise to him that I would fight for everyone to have access to drug trials. I wish he was here to see this day.
“This is one of the biggest MND trials the UK has ever seen - and it’s open to almost everyone with the disease.
“We will continue to fight to give people with MND access to effective treatments, and to beat MND once and for all. Together we can make it happen.”
He allowed cameras to follow his family for two years after his diagnosis to raise awareness of the condition and of his charity.
The result was the recent BBC TV documentary Doddie Weir: One More Try.
In the programme he spoke of his desire to find a cure, or a treatment to slow down and eventually reverse the symptoms of the disease.
He also spoke of his frustration at the lack of treatment options.
Calling on other MND patients to register for the trial, he said: "Of course I'm going to be part of the trial and I want to reach out to everyone else who has MND to register for the trial because at the moment there is nothing there on the plate for anyone who has got MND so it's an exciting time ahead.
"It's a great thing to be happening in Scotland and every patient of MND now has a positive step.
"I think 2020 will be an exciting time in the fight against MND."