Multi-million dollar initiative launched to study the progression of MS

Today the MS Society of Canada, along with Biogen Canada and Brain Canada, announced something that could change the way we understand, diagnose, treat and ultimately cure MS. I am excited to share the news with Canadians that a $7+ million study will be launched within a year, which focuses on studying progression in MS over time.

This announcement of the call for proposals to develop the Canadian MS Progression Cohort was welcomed with a flood of excitement by the MS community, but a lot of work remains and it will take several years before results from this large-scale study are generated. The study will begin in early 2018 and will be conducted by a team of researchers from across Canada that will competitively be selected. The successful team will examine people living with MS in Canada over a minimum of 5 years. With the generous support from our funding partners Biogen Canada and Brain Canada who are each contributing more than $2 million to the project, and with the remarkable contributions of over $2 million from PCL Construction and Bennett Jones LLP, the team will have the resources to build infrastructure that will enable to them to study progression from biological, lifestyle, and real-world perspectives. The Canadian MS Progression Cohort is a unique opportunity to observe the ways in which people living with all forms of MS progress in their disease, in order to pinpoint the exact triggers of progression and establish tools that can detect and monitor those triggers.

cohort 1This project marks a major milestone for the Canadian MS research and medical communities, as it is the first of its kind in the country that will address why certain people with MS progress in their disease and others do not, or why the rate of progression is faster for certain individuals and how that progression impacts them, their family and communities. The research team will investigate biological changes that occur during progression, the effects of treatments on disease progression, real-world health outcomes, socioeconomic impacts, and many other factors. This initiative will not only generate one of the most comprehensive MS databases, but will also encourage coordinated and collaborative research effort across Canada, engage the voice of people living with MS, and build an open resource that will not only benefit the Canadian MS research community but also researchers who look at other neurological diseases.

As news of this initiative was made public today, the shared feeling in the room was one of optimism for the future, as the results from this study could provide insight into elements of the disease that haven’t been investigated at a level of this magnitude before in Canada. We heard from Chantal Milne (diagnosed with MS in 2012), who took the podium and profoundly moved the crowd with her inspiring words. She spoke not only to what this study could mean for her, but also for her daughter and future generations of Canadians. “I am hopeful, I am confident, and I know we can do this. With some of the world’s best MS clinicians and researchers involved in this study, maybe by the time my daughter can ask me about what MS is and how it will impact me – maybe, just maybe – I will have the answer. That is where I want my MS journey to go, and the MS progression study is giving me a road map to get there,” says Chantal.

The importance of long-term interdisciplinary studies like the Canadian MS Progression Cohort are instrumental in finding connections and patterns between groups of people that may not have been distinguishable when examined in isolation or over a short period of time. The ability to collect and analyze different types of biological, clinical and real-world data from many different people living with MS provides a substantial opportunity for answers in a field of study where there are still so many uncertainties. Progression remains one of the complex, unaddressed features of MS that leads to debilitating outcomes for people affected by MS, and understanding progression will only be possible by following people over time.

Ultimately, this project could impact how we treat MS, how we diagnose MS, how people live with MS, and change how we talk about MS progression altogether – this is a significant pursuit of knowledge, one that could dramatically change the landscape about what we know about MS.

To find answers to any questions you might have about the trial, take a look at our Canadian MS Progression Cohort study FAQ.

Do you have any thoughts on the Canadian MS Progression Cohort study? Share them with us and leave a comment below.

5 thoughts on “Multi-million dollar initiative launched to study the progression of MS

  1. Sarah Lomas

    I’m very excited by this proposed study. Hopefully it will find some key answers to the question of why some progress and some do not, and be able to take those answers and apply them in the real world to decrease the progression of MS. I think the results of this study will be very illluminating and be a building block for a cure for this disease!

  2. Sharon Good

    I personally was diagnosed with MS in 1987 (Relapsing/Remitting) and have not had any instance of a problem, MS related, since 1991. It is thought that in my case, I’ve not had any occurrences of an exacerbation because my Immune System is so low. My Immune System is not active enough to go after and destroy the mylin coating protecting my nerves.

    I’ve since been diagnosed with Cancer of the bone and so many therapies have a common thread of “boosting the Immune System so it can kill the Cancer.” What would a therapy like that do in my situation? Would I have to look forward to exacerbations and possibly a disabling exacerbation?

    1. drkarenlee Post author

      Hi Sharon,
      Thanks for your comment and for sharing your story with us. Drugs that are traditionally used for the treatment of cancer, such as chemotherapy, suppress the immune system. There are also immune therapies that harness the fighting qualities of immune cells to combat the cancer cells. Some of these therapies activate T cells, for example, to fight the cancer. Research shows that activation of T cells contributes to demyelination in MS. So, while there is no direct evidence of the consequences of cancer immune therapies in MS, it’s possible that they could activate cells that are involved in MS. We suggest that you discuss any treatment option for any condition with both your health care teams, in order to understand the risks and benefits.

  3. Diane

    This study does sound like a great start. How will people with progressive MS be identified for the purposes of this study? I live in rural Canada where news travels slowly and there is only one neurologist. I’ve had PPMS (diagnosed) for 15 years. Have just started to lose things I used to take for granted. Grief is part of the process I hear. The process of letting go of one darn thing after another.

    1. drkarenlee Post author

      Hi Diane,
      Thank you for your comment and questions regarding the MS Progression Cohort.

      At the moment we have invited researchers to apply for funding to design and launch the cohort. In their application they will be expected to define in detail the criteria that will be used to identify and recruit participants to the cohort. These applications are subject to review, and once a team is selected they will begin planning the cohort and will be looking for participants. We appreciate your comment about rural communities and will ensure that news about the cohort is communicated through as many neurologists and clinics as possible and as quickly as possible. Stay tuned for further updates on recruitment.
      Dr. K


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