#BehindTheTrials: the people making one of the first ever trials for advanced MS happen
Clinical trials are key to finding treatments for everyone with MS. And although we often focus on the drugs under investigation, it’s the people involved who really make these trials happen.
In the next instalment of our #BehindTheTrials series, we’re meeting some of the people working on one of the first ever trials for advanced MS – ChariotMS.
What is ChariotMS?
ChariotMS is a brand new trial which will test whether cladribine can help slow down the effects of advanced progressive MS on people’s hands and arms. It’s a drug already used for highly active relapsing MS, under the brand name Mavenclad. They’re hoping to start recruitment for the trial early next year.
“I did my share of working in conflict zones. But MS just puts all that in the shade”
Christine Chapman, Public and Patient Involvement representative
“I suddenly lost the use of my hands about a year ago. I was lucky and they came back, but it was terrifying. I’m fairly brave. As a former TV journalist, I did my share of working in conflict zones. But MS just puts all that in the shade, sometimes it feels like you’re at war with yourself.
"Although I had to give up work after I was diagnosed, I realised I could use my skills to help MS research. For me, Barts, the birthplace of ChariotMS, was the obvious place to get involved. I’ve done everything from filming researchers in action to setting up patient support groups.
"I’ve been there almost since the beginning of the cladribine conversations - and it’s been a long haul! There have been disappointments, so you can imagine the feeling when everything we needed to make this trial happen finally fitted into place.
"One of our biggest ambitions is to restore hope. With a chronic condition like advanced MS where there are no treatments to slow it down, you’re not always so involved with the hospital. It’s too easy to feel abandoned. We want to change that.”
“This is my first MS trial and I’m so glad it’s ChariotMS”
Harpreet Mangat, Clinical Trials Manager
“Sometimes my friends don’t really get what I do. There can be this misconception around clinical trials that we just use people as guinea pigs, but that’s really not the case. I’ve worked in clinical trials for five years and everyone wants the same thing, and that’s to help people.
"I’ve mostly worked on cancer trials. This is my first MS study and I’m so glad it’s ChariotMS. It’s for people who just don’t have any treatment options available and that was the biggest selling point when I came on board.
"Setting everything up over the last year has been stressful but extremely rewarding. Clinical trials can be quite unpredictable with so many different people involved. There’s a lot of problem-solving, and lots and lots of meetings. I nearly cried with relief when I finally pressed send on the regulatory submission.
"Klaus, the chief investigator, feels it more than anyone I think. He’s been working for so long to get to this point. Now we can see the finishing line, or really the starting line I guess, where we can actually open the study up to participants.”
“Everything is in place and we’re ready to roll”
Professor Klaus Schmierer, Chief Investigator
“I can hardly describe how excited I am that ChariotMS is finally getting underway in earnest. What started as a chat between Professor David Baker and myself almost exactly 8 years ago will finally see the light of day.
"Over those years, through plenty of ups and downs, we built not only a strong case but an ever-stronger network of supporters - neurologists, scientists, trial managers, people with MS and many more.
"The list of people having carried ChariotMS to this is stage is long. Particular credits to our (relative) newbie trial manager, Harpreet, and to our digital editor and public and patient involvement member Christine, who’s been responsible for bringing our message to life on film.
"Whilst COVID-19 continues to be rather all-consuming, we were extremely fortunate in signing all the relevant contracts at the start of the pandemic. So we’ve been able to keep up the momentum of ChariotMS, and now everything is in place and we’re ready to roll!”
Advanced MS and treatments
There are no treatments that can control advanced MS itself, but there are things that can help with the symptoms. Find out more