Wales' first site for world-first progressive MS trial opens at University Hospital of Wales
The first Welsh site for a world-first mega trial for people living with progressive forms of multiple sclerosis (MS) has opened at the University Hospital of Wales in Cardiff.
The MS Society-funded trial, Octopus, 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 5,600 in Wales. For the tens of thousands who have the progressive forms* they have little to stop their MS from 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 treatments4. 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.
Octopus is being led by researchers from the Queen Square MS Centre2 and MRC Clinical Trials Unit at University College London (UCL). The University Hospital of Wales is one of up to 30 sites that will eventually open around the UK and started recruiting its first participants earlier this month.
Lisa Haines, 55, from Ely was diagnosed with primary progressive MS in 2006, three months after having her second child. In 2009 she was forced to medically retire due to severe fatigue. The former banking customer service advisor is the first participant to join the Octopus trial in Cardiff.
She says: “In 2017 I went to Mexico and paid privately for Hematopoietic stem cell transplantation (HSCT) as there were no eligible treatments for me in the UK. It was brilliant, and after the treatment a lot of my symptoms went, like my fatigue, brain fog and heart palpitations. My bladder was also a lot better for a while. But around 2019 I started having pain in my back which affected my legs. I was trying to exercise and do as much as I could but it stopped me in my tracks.
“The pain in my back is always there but I have bad days and better days. I think it’s got worse over the last couple of years from not going out during the pandemic. I’m still walking but my mobility is getting a lot worse. I need to use my mobility scooter to get around outside – it’s a godsend at car shows which we love to go to. My fatigue has also crept back in as I feel worse now than I did ten years ago.”
She adds: “I saw the Octopus trial in a few places and I registered via both the MS Society and the UK Register. I knew it was going be a national trial that tries something different and gets results much quicker.
“I felt brilliant being given a place on the trial. I couldn’t believe it! There is nothing else for people with primary progressive MS, so I’ve got nothing to lose. And if it doesn’t help me then it could only forward research for someone in the future. MS is such a horrible condition but I live in hope!”
Dr Emma Tallantyre, Octopus Recruitment Lead and Principal Investigator at the University Hospital of Wales has been working in MS trials for 15 years. She says: “Progressive MS remains an unmet need, both in Wales and around the world. Octopus is a landmark trial, one of the first of its kind in MS. Although repurposed treatments have been used before, this is a really neat way of using them to bring more efficiencies – that’s what we need.
“This is such an exciting opportunity for people, like Lisa, who currently have no or limited treatment options to have something that could be disease-modifying. And it’s great to feel that despite being a relatively small country, the UK might be responsible for moving things forward for people with MS on a global scale.”
Shelley Elgin, Country Director at the MS Society Cymru, says: “We’re delighted to see the Octopus trial site opening in Cardiff. More than 5,600 people live with MS in Wales – over 130,000 throughout the UK – and there are thousands with progressive forms who have nothing to stop their MS from getting worse. We won’t stop until we have treatments that transform the lives of everyone with MS.”