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Understanding the Canadian Proactive Cohort Study for People Living with MS: a conversation with Dr. Jiwon Oh

As one of the leading MS researchers in the country, researcher and clinician Dr. Jiwon Oh is ambitious to say the least. In addition to being a staff neurologist at St. Michael’s Hospital, where she specializes in caring for people living with MS, Dr. Oh also leads the magnetic resonance imaging (MRI) research program at the largest MS clinic in Canada. Adding to this list of achievements, she has also recently been selected to lead a team of nearly 50 researchers as part of the Canadian Proactive Cohort for People Living with MS (CanProCo). We sat down with her to find out more about this exciting new initiative. Here are some highlights:

What led you to this project?

Portrait shot of Dr. Jiwon Oh.
Dr. Jiwon Oh

Dr. Oh: Over the past 10 years, we’ve seen a huge amount of advancements. For example, the number of treatments for relapsing-remitting MS (RRMS) has tripled. There’s a lot of hope and clearly a lot of effort internationally to better understand the disease, develop better treatments, and improve the lives of our patients. But as a clinician, I think the one area where there’s a real need for improvement is in understanding why progression in MS occurs and exploring treatment options for progressive MS. That’s what drew me to this project. It’s a huge national effort focused entirely on trying to understand progression in MS.

Can you explain what the CanProCo is?

Dr. Oh: This project has been many years in the making and the MS Society of Canada has taken the lead in raising funds to enable the establishment of project that will recruit a cohort of people living with MS at key centres across Canada. We plan on following the cohort for a minimum of five years to look at a wide array of factors that may be relevant to progression in MS. This will help us understand the mechanisms underlying progression as well as the risk factors. Ultimately, the goal is to try and develop better management strategies, whether it’s developing better treatments that target progression,  methods to prevent progression, or developing systematic ways to holistically manage patients with progressive MS.

To be clear, this is not a cohort that will only include people living with progressive MS, but also individuals diagnosed with other forms of MS. We want to study why progression in MS occurs across the spectrum of disease, which is why the cohort will include people with many different subtypes of MS.

What about the CanProCo is uniquely exciting in the field of MS research?

Dr. Oh: As I mentioned, it’s the first cohort effort that is specifically trying to understand progression in MS. The other thing is the fact that it’s a national effort. With our high rates of incidence and prevalence, Canada has a long history of significant contributions to the field of MS research. Canadians have a unique way of coming together to find solutions. In CAnProCo, many leading experts from across the country will come together to collaboratively study progression in MS. Each of these experts have strengths in different fields of science that are crucial to understanding MS – neuro-immunologists, epidemiologists, neuroimaging experts, clinical experts and so on.

What’s the significance of a project of this kind in advancing our knowledge of MS?

Dr. Oh: One of the truly greatest unmet needs in MS is trying to understand and treat progression across the spectrum of MS. The CanProCo is aims to address this need. There are other cohorts that exist globally but none that focus on this specific need. When you have a targeted goal like this, it increases your likelihood of exploring the appropriate avenues which will hopefully give you more insight and lead you closer to answers that will benefit people living with MS.

How do you think this information will lead to opportunities to collaborate internationally in the future?

Dr. Oh: One of the mandates of this cohort is to try and improve efficiency by linking our cohort to other existing cohorts, which will allow us to take advantage of collaborative efforts from around the world. For example, the International Progressive MS Alliance funded an imaging project by Dr. Doug Arnold, a Canadian neurologist and scientist. We’ll likely collaborate with Dr. Arnold as the CanProCo can be used to validate some of his findings. We will also contribute our data to MSBase, a large worldwide registry of MS patients. So, while one of the goals of the cohort is to use the data we collect, another important goal is to engage in other collaborative efforts to mutually benefit and improve efficiency of scientific discovery.

We know MS affects everyone differently. How do you think this project will help bring about solutions that can be applied across the board to people living with MS?

Dr. Oh: One of the challenges of MS is that it requires personalized disease management. The benefit of this cohort is that we’re not just collecting biological data, but we’re looking at a wide array of factors that may be relevant to progression in MS that ranges from biological data to clinical and environmental data to health outcomes and more. Using this wide lens which spans across many different scientific fields will allow us to personalize and tailor management and treatment of people living with MS in many different realms.

Can you highlight what this study means for people living with MS when it comes to better understanding of biological mechanisms of progression, identification of risk factors (environmental, clinical, health systems) for progression, and developing markers that can assist in patient care, including markers that can better predict how people will do over time?

Dr. Oh: We’re not just trying to understand mechanisms relevant to progression. We’re trying to see what kind of modifiable environmental factors there are that may help prevent progression. For instance, we’re assessing factors like smoking, cannabis, and diet, all which may influence progression in MS. We’ll be able to assess comorbidities that may contribute to progression in some people, and how all of these factors are linked to one another.  MS is a very heterogeneous disease and it’s never clear in one person what needs to be changed to help with the disease and because we’re looking at so many  factors that span many different scientific fields of study, we’re hoping to understand what will be relevant for an individual person. I think that will be the difference we can make on an individual level.

How have the stories of your patients inspired you to continue your efforts towards ending MS?

Dr. Oh: MS is one of the few chronic neurological diseases that affects young people. Every day I see young people starting out their lives and careers and families while dealing with the prospect of having accelerated neurological disability and I can’t imagine how challenging that is. That’s what motivates me to do something that can really help. It’s also inspiring to see the strength and hope people have, despite the uncertainty. I learn from my patients as much as they learn from me.

  1. Gervais Angelo Harry says:

    Hi Dr Oh,

    My name is Gervais A Harry.
    I have an idea that may lead to a cure for MS.
    I am preparing a paper on the subject.
    I need statistics on worldwide prevalence of MS and particularly, I am looking for a graph to show the rate of increase over the last 50 or so years.

    Can you help – where can I find such a graph?

    Thank you in advance.


  2. Deb Martens says:

    Hi, Dr. Oh.

    I come from a family in a second generation of diverse individuals diagnosed with Multiple Sclerosis. One of the first generation is still alive, a twin aunt and mother to a daughter who died at 21 from MS., but whose sister twin passed away 25 years ago with severe MS. That twin had three children, two of whom are diagnosed and one may be in process at age 52. One remaining sibling may have had symptoms, my mother. I “formerly” was diagnosed 12 years ago. Do you think we would be worth looking at?

    • Palvasha Shoaib says:

      Hi Deb,

      Thank you for your comment. The MS Progression Cohort will look at many variables that contribute to progression in MS. One component may even be the involvement of genetics in progressing in MS.

      If interested, we would encourage individuals to contact the cohort team to determine if they are eligible to participate in this study that is poised to make an impact in the MS field. You can find all details here:

      We hope this helps!

  3. carlo accardo says:

    Hello Dr. Oh. I was diagnosed with MS approximately 5 years ago. I can still walk and go to work. I believe MS is a contagious viral disease that can be contact by touch or air. I also believe that the researchers do not have the equipment currently to detect this viral enemy. Due to the fact that Canadians are one of the highest group that get this disease, common sense would dictate that this viral disease travels better in a cold environment. At the age of 52 I got the chicken pox. After the antibiotics cured my chicken pox I quickly starting feeling numbness in my legs. I am totally convinced that this was a co-relation to my MS conditions. I know that there have been some studies on this hypothesis. I am optimistic that the cause will be discovered and wish you and your team all the best.

  4. Paul Knox says:

    Having been diagnosed with MS at age 55 and undergone substantial progression, I wish Dr. Oh and colleagues all the best with this initiative. However, I urge them (and other progressive MS researchers) to pay attention to biases that may limit the uptake and translational impact of their findings. I refer specifically to the hierarchy of research design promoted by the evidence-based medicine (EBM) movement. This hierarchy assigns peak validity to randomized controlled trials (RCTs). Partly because of the success of EBM advocates, the flow of research funds has significantly favoured pharmacological interventions over physical therapy in the management of MS symptoms. Drugs are more conducive to investigation via RCTs and have been privileged in funding for both further research and clinical application. Yet progressive MS symptoms such as muscle spasticity and weakness – sometimes described as “poorly understood” in the literature – are commonly treated with physical therapy by clinicians in the paramedical disciplines. This therapy, involving movement and activity by both patient and therapist, is often effective, But it is inadequately supported by evidence because investigation cannot be sufficiently blinded or randomized. Lack of funding means participant groups are small and the experiments statistically underpowered. It will always be so until advocates for clinically relevant evidence (of which I am one) acknowledge that valid evidence in different therapeutic domains may have different characteristics. This would lead to a visual depiction of evidentiary validity that is vertical instead of, or at least as well as, horizontal. As you state, every MS patient’s physiology is unique. That should mean the field is ripe for investigation spurring advancements in personalized medicine and patient-centred care. This is unlikely to happen until the contradiction between randomized, blinded investigation and the essential idiosyncrasy of the individual case is squarely addressed. Cohort studies are fairly high on the EBM pyramid; their great value lies in their ability to capture much more patient experience than the RCT — let alone systematic reviews and meta-analyses, which exclude most studies and therefore most patients on grounds of statistical incompatibility. But cohort studies are only as good as their underlying attributes. These include assessment tools such as disability scales, which themselves may be of unproven validity. I urge investigators in this research to be advocates for reform of the science of evidence, so that their work will lead to robust funding for many types of research and therapy. Only then will it achieve the widest possible impact on the treatment of symptoms in progressive MS..

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