A woman from Harrow is one of nearly 1000 people to have joined the biggest ever academic-led trial for progressive multiple sclerosis (MS). It means all participants have now been recruited.
The multi-million pound trial, MS-STAT2, has been co-funded by the MS Society in collaboration with the National Institute for Health Research (NIHR), and the National MS Society in the US.
The Phase 3 study – which is also supported by the NHS and University College London (UCL) – is investigating whether the cholesterol-lowering drug simvastatin slows disability progression in secondary progressive MS. With recruitment now closed, results will be shared in 2025 when all participants have been part of the trial for at least three years.
Pooja Kanji, 34, was diagnosed with relapsing MS in 2003 but was told she had secondary progressive MS in 2020. Pooja lives with daily fatigue, tremors and her voice and mobility are badly affected by MS. She is currently signed off sick from work after a number of debilitating relapses, and now relies on carers four times a day. She accepted an invitation to join the MS-STAT2 trial at the National Hospital for Neurology and Neurosurgery in Londonwhen asked by her MS team.
She says: “My partner, Kirun, and I weren’t quite sure how the trial would work, but we thought if there’s a chance it could help me we couldn’t say no. My MS affects my life a lot and I feel like I’ve been on every treatment under the sun since I was diagnosed, so finding a treatment that slows my progression would mean the absolute world to us.”
Kirun – who first met Pooja at university 16 years ago – says: “People knew so little about MS when Pooja was diagnosed – now she has progressed so much and the last six months have been shattering for us as a couple. Pooja’s progression has hit me hard because from May we were just a normal couple and then suddenly I’ve never seen anything like it. Her speech went and she couldn’t get out of bed. I’m having some time off to deal with my mental health.
“It’s a relief to know that research is taking place to find what can help with progression. We think being on the trial is fantastic and that Professor Jeremy Chataway has done a great job in recruiting so many people. This isn’t just for Pooja, it’s for the future. I don’t want to see someone in five years’ time as progressed as Pooja.”
More than 130,000 people live with MS in the UK, and most expect to develop a progressive form of the condition. MS causes problems with how people walk, move, see, think, and feel. Positive results from a smaller phase 2 trial, MS-STAT, showed simvastatin could improve levels of disability and slow disease progression. It also reduced the rate of brain atrophy (shrinkage), suggesting the treatment could protect nerves from damage.
Dr Emma Gray, Assistant Director of Research at the MS Society, says: “Recruiting 964 participants to the MS-STAT2 trial is a really impressive MS research milestone, and we are grateful to each and every one of them for committing their time and energy to the study. While a few treatments for early progressive MS are beginning to emerge, there are still thousands of people who have no treatment options – this trial gives our community another reason to hope.
“There’s still a way to go, but thanks to Pooja and everyone involved, we’re on track to know by 2025 whether simvastatin could become the first neuroprotective MS treatment.”
Professor Jeremy Chataway, Chief Investigator of the MS-STAT2 trial, says: “We are delighted to have completed recruitment for MS-STAT2, a landmark trial for people living with secondary progressive MS. If successful, the trial could lead to a common, affordable statin becoming the first ever MS treatment to protect nerves.
“Recruiting almost 1,000 participants is an incredible achievement, especially as the pandemic halted recruitment for months, and many staff – including myself – were diverted to frontline NHS duties. We have the wonderful participants to thank in helping us reach this milestone and for committing to at least three years on the trial. We’re looking forward to sharing the results in 2025.”