Over the next five years, a team of doctors and experts in varying disciplines will be putting their heads together and comparing notes in hopes of gaining a better understanding of how Multiple Sclerosis progresses in patients.
The Canadian Proactive Cohort Study for People Living with MS or, CanProCo for short, will be led by Toronto-based neurologist Dr. Jiwon Oh at St. Michael’s Hospital.
“It’s a very common disease in Canada. Probably most people in Canada know somebody with MS,” Oh told CBC Toronto.
MS is an auto-immune disease that attacks myelin, a substance that sheathes and insulates the nerves in the brain and spinal cord. Although there are drugs that can slow its progress, there’s no cure and researchers have no idea what causes it.
Its symptoms can include loss of balance, pain, problems with mobility and vision, chronic fatigue, cognitive impairment, depression and anxiety. In some cases, the patient’s condition can deteriorate rapidly; in others, symptoms can remain mild for decades.
“The challenge with MS is that when somebody is presenting for the first time we don’t have a great way to predict exactly how they will do in the next five 10, 15, 20 years,” Oh said.
The study brings together about 50 clinicians and scientists who have expertise in many different fields of study that are important to MS.
‘It’s making everybody step outside of their comfort zone and look at things with another scientific field’s lens.’ – Dr. Jiwon Oh
To name a few, the team will consist of neuro-immunologists who’ll use their expertise in identifying molecules and pathways to examine how MS starts and progresses.
They’ll be working in conjunction with imaging experts who use novel MRI techniques to get better images of the brain and spinal cord.
Epidemiologists will be studying patient populations and health economists will look at the cost of the disease to the healthcare system.
“it’s making everybody step outside of their comfort zone and look at things with another scientific field’s lens,” she said.
Bridging the gap between research and lived experience
One thousand MS patients will be recruited for the study in early 2019.
They’ll represent people dealing with the different forms of the disease including Relapsing Remitting MS, which is the most common.
“There’s highs and lows,” she explained. “Sometimes it gets better, sometimes it doesn’t.”
“I represent the patient population that is affected by MS,” said Pylypjuk.
“One thing the MS Society is starting to do is really encourage patients to be engaged in the research but also help direct it,” she said.
‘A way for people to communicate better’
She wanted to make sure the team of elite experts also know how to communicate with the patients they’ll be working with.
“Right now, when you go to the MS clinic for your appointment, [which is] usually is a one once-a-year thing, you might not feel like you’ve been heard,” she said.
She says she wanted to stress the importance of consistent follow-up appointments and that patients should be updated on the study’s progress.
“I wanted to make sure that there was a way for people to communicate better and to be followed,” said Pylypjuk.
“This is an opportunity to maybe bridge the gap a bit between research and actually lived experiences.”
The $7-million study is supported by the Multiple Sclerosis Society of Canada, its donors and the nationally funded Brain Canada Foundation.
The minimum study duration is five years but Dr. Oh hopes to have it extended.
“The value of a cohort only increases as the follow-up duration increases,” she said.
“MS is a disease that really lasts decades.”