A world-first mega-trial for people living with progressive forms of multiple sclerosis (MS) has opened for participants in the UK, paving the way for up to 30 more sites across the country including at least one in Scotland.
The MS Society funded trial, Octopus, is being led by researchers from the Queen Square MS Centre and MRC Clinical Trials Unit at University College London (UCL).
It is a multi-arm, multi-stage (MAMS) platform trial designed to transform the way treatments for progressive MS are tested – and will work up to three times faster than traditional trials.
The same approach has changed how men with prostate cancer around the world are treated.
It has answered eight research questions about treatments in just 15 years, rather than the 50 years or so it would have taken using a traditional trial design.
More than 130,000 people live with MS in the UK, including over 15,000 in Scotland.
For the tens of thousands who have the progressive forms they have little to stop their MS getting worse.
Disability progression is caused by degeneration of nerves in the brain – something that happens to all of us as we age.
In MS and other neurodegenerative conditions, like Alzheimer’s and Parkinson’s, this happens more quickly.
Despite this, there are no treatments that target this.
Over several years, a group of world renowned scientific and clinical experts, as well as people living with MS, reviewed and ranked potential treatments.
Their focus was on existing drugs used in other conditions that have the potential to protect nerves.
The top two candidates, R/S alpha lipoic acid and metformin, were selected by the trial team as the first two drugs to test in the ‘arms’ of Octopus.
Participants are now being recruited at the University College London Hospitals NHS Foundation Trust (UCLH).
There will eventually be up to 30 sites around the UK, including one at the Anne Rowling Regenerative Neurology Clinic in Scotland that will open later this year
Iain Elder, 61, living in Dunfermline, Scotland, was diagnosed with secondary progressive MS in 2009.
After experiencing drop-foot in 2009, his mobility gradually declined, and today he has difficulty walking more than 20 feet.
Iain, retired after 25 years working in recruitment due to the mobility issues and fatigue MS caused.
Talking about the opening of the Octopus trial he says:
“I am slower, I am less able, I am gutted because I can’t work – that was always my sense of contribution to society.
“But there are two ways to approach it – either sit and rock in your corner and let MS take over, or think right, this will change, this will end, there will be a new tomorrow.
“So just keep going, keep at it, and one day there may be a cure.
“That’s why I want to do these trials when the Edinburgh site opens.
“You’ve got to go through the Nos to get to the Yeses.
“So even if these first drugs don’t work, they’ve still got that data on file.
“I think the Octopus trial, the new approach to drug treatments, and the new way of testing, are just amazing.”
Morna Simpkins, Director of MS Society Scotland, says:
“Launching the world’s first multi-arm multi-stage trial for MS has long been an ambition of ours and opening the doors to Octopus is a momentous milestone.
“We very much look forward to the site opening in Edinburgh.
“More than 15,000 people live with MS in Scotland – more than 130,000 throughout the UK – and there are thousands with progressive forms who have nothing to stop their MS getting worse.
“By tapping into the potential of approved drugs, which may have the potential to protect nerves, we can develop new treatments for MS faster.
“This is a major moment for MS research – Octopus has the potential to change the clinical trials landscape around the world.
“It’s thanks to all the wonderful participants that trials, like Octopus, can happen.
“We encourage people to explore the MS research possibilities available to them by going to www.mssociety.org.uk.
“We won’t stop until we have treatments that transform the lives of everyone with MS.”
Octopus is being led by leading neurologist Professor Jeremy Chataway, whose vision to rethink trials for progressive MS was born over a decade ago.
“The multi-arm, multi-stage approach to trialling emerging medications has been utterly transformative in other conditions, so I’m thrilled we’re now able to apply it to progressive MS.
“Ultimately, Octopus will lead to more treatments for progression becoming available to people living with MS sooner.
“Getting to this stage has been an incredible joint effort of people up and down the country.
“The other large trial I am the Chief Investigator for, MS-STAT2, has shown we can run large-scale, nationwide trials for progressive MS.
“Now we’re taking it to the next level, as we start a new journey to develop treatments for progressive MS.
“I know our amazing community of people is poised to help us make it to the top, so we can find the answers we so desperately need.”
Consultant neurologist and Principal Investigator for the Octopus trial site at the Anne Rowling Clinic, Dr Peter Foley, says:
“Currently there are huge gaps in the treatments available for people who have progressive forms of multiple sclerosis.
“We’re excited to be part of this large trial which we hope will help change the way progressive MS is treated in the future”
Octopus is being funded by donations to the MS Society’s Stop MS Appeal.
Stop MS needs to raise another £30 million of its £100 million target to help find treatments that could slow or stop the build-up of disability for everyone with MS.
The trial is also supported by the National Institute for Health and Care Research UCLH Biomedical Research Centre.
Anyone who has primary or secondary progressive MS in the UK can register their interest via the UK MS Register.