Multiple Sclerosis: Co Armagh man Ian Young's hope for new treatment as new world-first 'mega-trial' gets underway in Northern Ireland

Ian Young, 61, a civil servant from Armagh City, was one of the first participants recruited to the Octopus trial’s Belfast site.

Octopus is a multi-arm, multi-stage (MAMS) trial, designed to transform the way treatments for progressive MS are tested. Its focus is on existing drugs already approved for the treatment of other conditions, but which may also work to slow down or reverse MS progression. Multiple drugs are tested at once, rather than testing one drug at a time against a placebo. This method works up to three times faster than traditional trials. Participants are already being recruited to the MS Society-funded Octopus trial, with 123 volunteers from NI expected to take part over the next five years.

Ian, a father-of-three, said: “For the whole time I’ve had this condition – which is a long time – there’s been nothing I’ve been able to do about it. There was a certain amount of frustration involved in that. My hope at the minute is that the Octopus trial will lead to researchers finding a treatment that will slow down MS progression, and I will be able to maintain the quality of life that I have now. If they were to come up with something that reversed the symptoms, and the progression, then that would be fantastic. But I’m trying not to get ahead of myself. I’m just hoping that, as a first step, they can put the brakes on a bit.”

Ian’s symptoms include fatigue, numbness, spasticity (muscle stiffness and spasms), balance issues and restricted mobility. His MS is also made worse by both heat and cold. He’s not currently eligible to take any MS treatments but has been prescribed vitamin D.

He added: “The people involved in the trial are all very good, really helpful and considerate. I feel very well looked after. It’s really great that progressive MS is now getting so much attention. It definitely gives me hope.”

MS is a condition that affects the brain and spinal cord. This impacts how people move, think and feel.  More than 130,000 people live with MS in the UK; consultant neurologists say latest figures show more than 5,500 of those are in Northern Ireland. For the tens of thousands who have one of the progressive forms, they have little to stop their MS getting worse.

Stewart Finn, Northern Ireland director at the MS Society, said: “People living with primary or secondary progressive MS currently have very few treatment options available to them. Octopus has the potential to change that by developing life-changing treatments far sooner than a traditional trial would be able to. This trial represents a major step forward for MS research globally, and we’re really pleased that both medical professionals and members of the MS community in Northern Ireland will be a part of that.”

A MAMS trial changed the way men with prostate cancer are treated around the world. But this type of research has never been used in relation to MS treatments, until now.

In Northern Ireland the trial will be led by consultant neurologist Dr Gavin McDonnell as part of a multidisciplinary team from the Belfast Health and Social Care Trust. The site is in the NI Clinical Research Facility at Belfast City Hospital.

Dr McDonnell, who is also honorary senior lecturer at Queen’s University Belfast, said: “The unique design of Octopus will allow us to identify and fast-track treatments of particular promise. We want to emphasise that while the trial is based in Belfast, we’re keen to ensure access is open right across Northern Ireland. The 20 patients formally screened so far are drawn from all five of the Health and Social Care Trusts (HSCTs) here. Unlike many previous MS treatment trials, Octopus is open to a broad range of patients, including those with more advanced mobility issues. We are aiming to recruit 38 patients here by the end of December 2024 (for phase 1) and then a further 85 patients in the following three years for phase 2 of the trial.”

Octopus is open to people aged 25 to 70 at the time of enrolment. Everyone from those who can walk short distances without aid to wheelchair-users who still have use of their arms, can be eligible to join the trial, as long as their MS has progressed in the previous two years. Participants can continue to take their prescribed MS treatments while on the trial.

The first Octopus site opened in London in spring 2023 and there will eventually be up to 30 sites throughout the UK. The trial has also been extended to Australia, where it’s called Platypus; 250 participants are expected to be recruited there.

Professor Denise Fitzgerald from Queens University is a leader in the field of MS research and will be part of the multi-disciplinary team for the Octopus trial in NI. She said: “The research study embedded within this trial will allow researchers, like us, to learn more about disease progression in MS and how treatments may work to slow down that progression. This will also support cutting-edge training of the next generation of clinicians and scientists specialising in MS, right here in Northern Ireland.”

Octopus will test several experimental MS therapies against a shared control group. This is what makes the trial multi-arm.

The trial is currently testing two drugs, metformin, which is approved for diabetes in the UK, and alpha lipoic acid, which is approved for neuropathy – a type of nerve damage – in Germany. Both drugs have shown potential to help protect nerves.

**Anyone who has primary or secondary progressive MS in the UK can register their interest via the UK MS Register. Visit www.ukmsregister.org/octopus