Dr. Karen Lee's Blog https://drkarenlee.ca An Inside Look at MS Research Tue, 28 Mar 2017 13:20:33 +0000 en-US hourly 1 https://wordpress.org/?v=4.6.4 120353486 Multi-million dollar initiative launched to study the progression of MS https://drkarenlee.ca/multi-million-dollar-initiative-launched-to-study-the-progression-of-ms/ https://drkarenlee.ca/multi-million-dollar-initiative-launched-to-study-the-progression-of-ms/#respond Tue, 28 Mar 2017 13:08:37 +0000 https://drkarenlee.ca/?p=1567 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.

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Depression and Disability: Playing a role in opinions about Physician Assisted Death? https://drkarenlee.ca/depression-and-disability-playing-a-role-in-opinions-about-physician-assisted-death/ https://drkarenlee.ca/depression-and-disability-playing-a-role-in-opinions-about-physician-assisted-death/#respond Tue, 21 Mar 2017 20:23:51 +0000 https://drkarenlee.ca/?p=1564 Each person living with multiple sclerosis (MS) experiences a different journey. Life with MS can sometimes be difficult, especially when the person faces depression, anxiety, disability and pain, which all impact their quality of life.  So, when MS Society of Canada-funded researcher and MS neurologist Dr. Ruth Ann Marrie from the University of Manitoba and her colleagues decided to reach out to people living with MS to hear their views on physician-assisted death (PAD) (or medical assistance in dying)- it brought about some  interesting data that warrants further understanding of the significant life challenges in MS that need to be addressed.

Who was surveyed and what did they have to say?

Adapted from Marrie et al., 2017.

Adapted from Marrie et al., 2017.

More than 7,500 people responded to a survey about physician-assisted death, which Dr. Marrie and colleagues administered through an active global MS registry called the North American Research Committee on Multiple Sclerosis (NARCOMS). The survey found 7% of responders would consider PAD in all of the following hypothetical situations: (1) experiencing unbearable pain; (2) causing a financial burden to caregivers; (3) feeling extreme emotional distress; (4) inability to do things that make you happy; and (5) inability to enjoy anything that makes your life worth living. It also found that 20% of responders would not consider PAD in any of the situations.

The situation in which most of the responders would consider PAD is if they were to experience unbearable pain (65%), and nearly 50% of the surveyed individuals would probably or definitely consider it if they were unable to enjoy anything in life that would make life worth living.  Other things discussed in the survey which contributed to consideration of PAD include financial burden to caregivers, inability to be happy and feelings of extreme emotional distress.  In each of the situations except for unbearable pain, over one-third of responders indicated that they would probably or definitely consider PAD.

One thing to keep in mind is that certain groups of people living MS may not be captured in this snapshot.  In fact, there was a difference of age and race between the people that answered compared to people that did not answer the survey.

There were certain factors which influenced the responders’ thoughts around PAD- disability and depression being two of them.  Interestingly, depression was also found to be linked with thoughts of PAD in people living with AIDS, which research shows can be reduced if the depression is effectively treated. Recently, MS Society-funded researcher and neuropsychiatrist Dr. Anthony Feinstein from Sunnybrook Research Institute published an article in Multiple Sclerosis Journal on the link between leisure activities and depression.  He found that depression in people living with MS leads to reduced participation in leisure activities such as reading and writing. The high prevalence of depression in people with MS and its impact on quality of life is an important piece that needs to be further studied, especially in light of the findings from Dr. Marrie’s PAD survey. Additionally, the importance of social support for people with MS is highlighted in the survey, as higher levels of social support and engagement in religious activities such as attending church, were associated with a lower likelihood of considering PAD.

In 2015 the Supreme Court of Canada ruled that a competent adult with a “grievous and irremediable medical condition” has the right to end their life. However, we would be remiss if we did not state that MS is a complex disease and it is important to figure out the factors that influence health and long term care decisions. This survey stresses the importance of providing adequate support for people living with MS, in addition to addressing the high rate of depression and developing ways to adequately diagnose and treat depression early on in people with MS.

The MS Society provides many services that can help people get cope and live with the disease.  If you want to find out more about MS and how to cope with it or if you have any question regarding the disease- connect with an MS navigator by calling 1-844-859-6789 or emailing them at msnavigators@mssociety.ca.

Source:  Marrie RA et al. (2017) High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. [Epub ahead of print]


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ACTRIMS 2017: Putting the microbes in our gut under the microscope https://drkarenlee.ca/actrims-2017-putting-the-microbes-in-our-gut-under-the-microscope/ https://drkarenlee.ca/actrims-2017-putting-the-microbes-in-our-gut-under-the-microscope/#respond Sat, 25 Feb 2017 18:53:18 +0000 https://drkarenlee.ca/?p=1557 Each person’s gastro-intestinal system is home to trillions of bacteria collectively known as the gut microbiota. These tiny creatures are essential partners in good health, and in less than a decade MS researchers have gone from considering the gut microbiota to be a curiosity to gathering evidence that disruption of the gut’s natural bacterial balance is linked to MS. A powerful method of studying the gut microbiota is to investigate the gut microbiome – the genetic composition of the microbiota. Unresolved questions about the gut microbiome persist, such as: Do people with MS have different microbiome “fingerprints” than people without MS? Does the gut microbiome play a functional role in modifying MS risk and/or disease course? Does the gut microbiome represent a potential therapeutic target in MS? Leaders in the field of MS and gut microbiome research here at ACTRIMS 2017 presented some of the latest findings that tackle these questions.

Wild garden of the gut bacteria (Credits: Nicola Fawcett; Wikimedia Commons)

Wild garden of the gut bacteria (Credits: Nicola Fawcett; Wikimedia Commons)


Renowned MS researcher Dr. Howard Weiner (Harvard Medical School) presented findings from an exploratory study that measured and compared the gut microbiome in 60 people living with MS and 43 healthy controls. His team found that people with MS had a unique microbiome “signature”, set apart by increases in the bacterial genus Methanobrevibacter and Akkermansia, and a decrease in Butyricimonas. Importantly, these changes in the gut microbiome profile correlated with the expression of genes in T cells and monocytes involved in key pathways linked to the MS disease process, which suggests that changes in the microbiome may help to trigger or drive MS, although it’s still not known if these changes are a cause or consequence of the disease. Another interesting finding was that elevated methane was detected in a certain proportion of the MS group, which is thought to be linked with increased Methanobrevibacter presence in the gut; future studies could investigate whether breath methane could be used as an easy-to-collect biomarker for MS.

Dr. Weiner also presented preliminary data from a study examining the effect of probiotics on the gut microbiome and its potential implications for MS. In a clinical context, probiotics are live, non-toxic micro-organisms that are being actively investigated for their potential benefits in health and disease. Dr. Weiner described a small pilot study in which 9 participants with MS and 13 healthy controls were orally administered VSL#3, a probiotic which has shown evidence of potential benefits in mice with an MS-like disease by both encouraging anti-inflammatory and discouraging pro-inflammatory immune responses. After being administered twice daily for 2 months, VSL#3 changed the relative composition of the gut microbiota compared to before treatment, which was accompanied by a decrease in peripheral levels of pro-inflammatory immune cells and signaling molecules in both the MS and healthy control groups. Discontinuation of VSL#3, on the other hand, was associated with a decrease in the levels of anti-inflammatory regulatory T cells. These findings, while promising, are still very preliminary, and larger studies looking at MS-specific clinical and imaging outcomes will be necessary to probe the potential benefits of probiotics like VSL#3.

Since children and adolescents in general have had fewer environmental and lifestyle exposures in life compared to adults, including exposure to diets, infections and so on, the study of the gut microbiome in pediatric MS offers a unique window in which to explore the possible triggers or modifiers of the disease. MS Society-funded researcher Dr. Helen Tremlett (University of British Columbia) presented findings from two studies probing the relationship between gut microbiome and pediatric MS. The first, a case-control study conducted by Dr. Tremlett and Dr. Emmanuelle Waubant (University of California San Francisco), compared the gut microbiota in 18 cases of new-onset pediatric MS and 17 healthy controls. They found that children with MS had subtle differences in the gut microbiota that were suggestive of a pro-inflammatory profile compared to those without MS. However, the study was not designed to answer the question of whether the gut microbiota can influence MS relapses. To answer this question, a second study examined children with early pediatric MS over time to determine if specific gut microbiota “signatures” are associated with subsequent relapse risk. Dr. Tremlett and her team found that the composition of the gut microbiota in children with MS was associated with relapse risk; specifically, individuals lacking one particular genus of gut microbe – Fusobacteria – were 3.2 times more likely to suffer an earlier relapse than individuals who tested positive for the bacteria. Although these observations warrant more research, they may pave the road for modifiable targets to improve outcomes in both pediatric and adult MS. Dr. Tremlett is continuing this important work with funding from the MS Society-affiliated MS Scientific Research Foundation in collaboration with the Canadian Pediatric Demyelinating Disease Network and the US Network of Pediatric MS Centers.

Interested in learning more about the relationship between the gut microbiome and MS? Leave your comments below.

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ACTRIMS 2017: What we know (and don’t know) about dietary factors and MS https://drkarenlee.ca/actrims-2017-what-we-know-and-dont-know-about-dietary-factors-and-ms/ https://drkarenlee.ca/actrims-2017-what-we-know-and-dont-know-about-dietary-factors-and-ms/#respond Sat, 25 Feb 2017 05:04:51 +0000 https://drkarenlee.ca/?p=1553 The interaction between dietary factors and MS can be a tough nut to crack. On one hand, there is mounting evidence to show that certain nutrients and dietary factors can influence immune regulation and potentially modify the risk of MS or its disease course. On the other hand, dietary factors are notoriously challenging to study in a controlled clinical trial setting; diet trials are difficult to design, results can be influenced by a plethora of other factors (including physical activity, socioeconomic status, certain lifestyle habits, etc.), and individuals often find it challenging to adhere to the intervention plan. Nonetheless, there’s a great deal of high caliber research taking place that’s chipping away at the mysteries surrounding the relationship between certain dietary factors and MS risk and disease course. At this year’s ACTRIMS Forum, several experts in the field presented some of the latest data on this file.


Dr. Ellen Mowry (Johns Hopkins University) presented a sweeping overview of what’s known (and what isn’t) about the association between vitamin D and MS – although it’s important to remember that diet represents only one source of vitamin D alongside sunlight exposure and supplementation. On the one hand, observational studies studying large groups of people have shown that lower levels of 25-hydroxyvitamin D (25(OH)D – the major circulating form of vitamin D used to determine vitamin D status – are associated with an increased risk of MS. In those already living with MS, lower 25(OH)D levels are linked to a greater risk of subsequent relapse, new lesions on imaging scans, and possibly greater disability progression and brain shrinkage.

Based on small, inconclusive pilot trails thus far, the influence of vitamin D supplementation on MS outcomes is still uncertain. Dr. Mowry presented preliminary data from the SOLAR trial, which is testing the effects of vitamin D supplementation (6,670 IU/day for 4 weeks followed by 14,000 IU/day for 44 weeks) as an add-on to interferon beta-1a (Rebif) on MS outcomes, versus placebo and Rebif. The data so far shows no significant effect of vitamin D supplementation on annualized relapse rate or NEDA (no evidence of disease activity – a composite score indicating no relapses, no EDSS change, and no new or enlarging lesions), although the vitamin D group did have fewer combined unique lesions on MRI compared to placebo. Overall, questions about vitamin D supplementation – such as how much to take, how often and for how long – for people living with or at risk of developing MS remain unanswered, although the MS Society is working with vitamin D and MS experts to provide more clarity for these questions.

Professor Ralf Linker (Friedrich-Alexander University Erlangen-Nuremberg) presented work on the link between dietary fats and risk of MS. Dietary fatty acids appear to have differing effects on measures of autoimmunity depending on their chain length (chains of carbon atoms linked by bonds). Long chain fatty acids promote the activity of disease-causing T cells such as Th1 and Th17 cells, whereas short chain fatty acids enhance the activity of regulatory T cells which are known to quiet down inflammation. Prof. Linker presented findings from both studies in mice with an MS-like disease and in human participants showing that propionate, a short chain fatty acid, can potentially improve MS disease outcomes. In a proof of concept study, participants living with MS and healthy controls were given propionate capsules for a period between 14-60 days (1g daily), and their immune cell profiles were analyzed. Propionate increased the proportion of beneficial regulatory T cells while decreasing disease-causing Th17 cells in all treated individuals, and these effects were sustained for 2-3 weeks after propionate treatment was stopped. These results suggest that intake of short chain fatty acids could potentially provide additional benefit as an add-on to treatment with disease modifying therapies, although further studies are needed to look at their effects on specific disease outcomes.

There’s mounting evidence to suggest that salt (specifically, sodium chloride) intake could influence MS disease course. Dr. David Hafler (Yale School of Medicine) presented findings from both animal and human studies showing that sodium chloride increases certain inflammatory markers like Th17 cells that are linked to the MS disease process while curbing the activity of beneficial regulatory T cells. Dr. Hafler dug even deeper to show the molecular mechanisms underlying this response, showing that blocking certain molecular pathways could undo the stimulation of disease-causing Th17 cells by sodium chloride. Interestingly, pairing high salt intake with increased fat intake – in essence mimicking a “fast food” diet – in mice similarly led to an increase in Th17 cells and a loss of regulatory T cells. Overall, high salt and fat intake appear to be linked to poorer immune responses. Although the benefits of dietary modifications for people living with MS on MS-specific outcomes are still unclear, strong evidence points toward lower salt intake in particular being beneficial for cardiovascular-related comorbidities, many of which are more prevalent in people with MS compared to the general population.

In addition to the challenges involved in testing the effects of certain dietary interventions on MS disease outcomes, little is known about what types of diets people with MS follow in the “real world”, their reasons for following these diets, and their perceived effectiveness. Dr. Kathryn Fitzgerald (Johns Hopkins Hospital) and a team of population health specialists conducted a survey among participants in the North American Research Committee on MS (NARCOMS) registry asking about 19 specific diets or diet plans – including Mediterranean, Swank, Wahl’s, Atkins, Weight Watchers, etc. – they followed since being diagnosed with MS. Of the 7,418 individuals who responded, 44% reported that they either currently or previously followed at least one diet plan. The highest proportion of respondents (21%) currently followed a gluten-free diet, whereas 45% previously followed a weight loss plan diet. 15% of individuals either currently or previously followed the Swank diet, and 8% currently or previously followed the Wahl’s diet. The perceived effectiveness of the different diet plans varied; 88% of those on the gluten-free diet felt that it was effective in helping their MS; 73% of those on a weight loss plan diet felt it was effective; 50% of those on the Swank diet considered it effective, and 61% of those on the Wahl’s diet thought it was effective. Overall, the study fills a gap in our knowledge about how different diet plans are approached and perceived among people living with MS.

What are your experiences with different diet plans? Leave your comments below.

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Genetics and environmental/behavioural factors top the agenda at ACTRIMS Forum 2017 https://drkarenlee.ca/genetics-and-environmentalbehavioural-factors-top-the-agenda-at-actrims-forum-2017/ https://drkarenlee.ca/genetics-and-environmentalbehavioural-factors-top-the-agenda-at-actrims-forum-2017/#respond Thu, 23 Feb 2017 21:44:52 +0000 https://drkarenlee.ca/?p=1548 actrims_logo_450-glow

Bringing scientists and clinicians together under one roof to share knowledge and forge collaborations is a key stage in moving MS research forward. This year’s Americas Committee for Treatment & Research in Multiple Sclerosis (ACTRIMS) Forum kicks off today in Orlando, Florida. The research team is on site to absorb the latest research and clinical findings in the field and distill the information down into digestible, take-home messages for our readers.

The theme of this year’s forum is “Environmental Factors, Genetics and Epigenetics in MS Susceptibility and Clinical Course”. Not surprisingly, we’ll be hearing a lot about hot topics like interactions between MS and diet, why women are more susceptible to MS than men, the role of viral infections and the gut microbiome in MS, and new insights from in-depth genome-wide analyses to pinpoint genetic variants associated with MS. Many of these topics have grown from niche topics on the fringes of scientific investigation into comprehensive and evolving fields of study in their own right, so we’re looking forward to some fresh and exciting insights into how our genes, our environment, and our behaviours can influence MS.

#actrims2017 attendees are in for a packed schedule over the next few days.

#actrims2017 attendees are in for a packed schedule over the next few days.

Stay tuned for more updates on #actrims2017 over the next few days, both here on the blog and on Twitter at @Dr_KarenLee.

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Happy Holidays! Here are my top research moments of 2016! https://drkarenlee.ca/happy-holidays-here-are-my-top-research-moments-of-2016/ https://drkarenlee.ca/happy-holidays-here-are-my-top-research-moments-of-2016/#respond Fri, 23 Dec 2016 20:38:16 +0000 https://drkarenlee.ca/?p=1545 Team TBS (left to right: Abhinav Grover, Denez Zahra Bokhari, Muhammad Inzamam Tahir, Muhammad Tahsin Sharif)

Team TBS (left to right: Abhinav Grover, Denez Zahra Bokhari, Muhammad Inzamam Tahir, Muhammad Tahsin Sharif)

As the holidays quickly approach us I wanted to take a moment to reflect on the incredible year that the MS community has had in terms of advances in research.

This year, the MS Society of Canada and MS Scientific Research Foundation announced the publication of a landmark clinical trial that they jointly funded over 15 years ago. The trial, led by The Ottawa Hospital’s Dr. Mark Freedman and Dr. Harold Atkins, propelled Canada to the forefront of stem cell research for MS, and is considered one of the most successful stem cell trials for MS to date.

Jennifer Molson, one of the patients who received the procedure that involved immunoablation and transplantation of hematopoietic (blood-forming) stem cells, has become a fervent advocate for stem cell research and continues to publically share her journey throughout and after the clinical trial. Publication of the results of the trial has heightened the MS community’s understanding of the applications that stem cells have for MS, and paved the way for ongoing research that will hopefully lead to stem cell treatments that can be broadly used to treat all types of MS.

This year the MS Society awarded funding for two new projects focused on translation of progressive MS research findings into potential treatments for people living with progressive disease, but also those who have relapsing-remitting MS who are at risk of transitioning to progressive MS. These projects involved collaboration with the Centre for Drug Research in Development, a non-profit drug develop research centre based on Vancouver that possess an inerdiplinary drug development team and fully integrated research facility.

Throughout the year the MS community voiced a deep interest in understanding the effects of environment and lifestyle on the cause, development and severity of MS. We heard questions such as, “does low vitamin D increase risk for MS?”, and, “if I have MS will taking vitamin D help to manage my disease and symptoms?” People also wanted to know if diet and physical activity can help to treat MS or curtail symptoms like fatigue, mobility impairment, spasticity and pain.

To address these questions and gaps, the MS Society announced funding for three wellness-focused research studies, which will involve a team-based approach between academic researchers and community-based organizations. We also awarded a $15,000 grant to a group of students from the University of Waterloo in Ontario named Team TBS (pictured above) that would enable them to develop a wearable device that transmits information about a person’s MS symptoms to an app. The goal is to use the data that is stored in the app to identify any trends or changes that could help one’s healthcare team make informed treatment decisions. The group is nearly done the project and is looking to launch the new technology in 2017.

Additionally, in March of this year, the MS Society brought together the world’s leading experts in vitamin D and MS, and hosted a one-day meeting in March in which they discussed the latest data on the relationship between vitamin D and MS. Based on their discussions, the expert panel developed a series of guidelines on vitamin D testing and intake that is currently under review before they are translated into recommendations for the general public. The hope is that these recommendations will not only inform people affected by MS how much vitamin D they can safely take and whether the data suggests that it can help with their disease, but also provide a more clear understanding of what vitamin D is and the role it plays in MS.

This year the International Progressive MS Alliance announced $18 million in funding for three large projects that will involve global networks of MS researchers. One of these projects will be led by Canadian imaging pioneer Dr. Doug Arnold from McGill University. I am very excited to see whether these projects lead and am confident that the collaborative effort that is being undertaken by each group is the best way to go in terms of expediting the search for new treatments for progressive MS.

Finally, this year could not have ended on a better note than with the 2016 endMS Conference. While it was a busy time of planning and preparations, I am sure I speak on behalf of my MS Society colleagues when I say that it was an amazing conference! I enjoyed hearing about the latest research in the MS, while interacting with MS researchers and clinicians who seemed just as enthusiastic. I saw many familiar faces, but also a lot of new faces which is encouraging as it tells me that the field is expanding and new trainees and investigators are joining the fight to endMS.

I was truly impressed by the intellect, innovation, maturity, professionalism and passion that was evident in each trainee platform and poster presentation that I witnessed throughout the week. I also enjoyed hearing the trainees answer questions from senior researchers and participate in lively discussions during the panels. Another favourite moment of the conference for me was HEAR MS Day. Over 70 people affected by MS came together to meet with the trainees and talk about what MS research means to them and what the impact of research is on their lives. The exchange of dialogue, stories, and perspectives around the room was inspiring for all of us who took part in it, and I hope that we can do more of these types of interactive workshops in the future!

These are only a few of the many noteworthy research moments that have made 2016 an exceptional year for research. It brings me a lot of hope to know that the MS research community is working hard to answer the complex questions about MS that still remain, while working with the clinicians to develop and provide tools for earlier detection, individualized treatment, and comprehensive care. I look forward to seeing the progress of these studies in 2017, and await the next major advances that will move the needle in our search for a cure.

On behalf of the MS Society I wish all of you Happy Holidays!

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Looking back on the 2016 endMS Conference https://drkarenlee.ca/looking-back-on-the-2016-endms-conference/ https://drkarenlee.ca/looking-back-on-the-2016-endms-conference/#respond Wed, 14 Dec 2016 22:00:30 +0000 https://drkarenlee.ca/?p=1541 Now that the dust has settled from last week’s endMS Conference and the country’s top MS researchers have returned home to continue their amazing work, we can reflect back on the week and celebrate the coming together of so many great minds that have embarked on tackling the many unresolved questions about MS. In organizing the endMS Conference, we set out to bring researchers of all levels, at various stages of their careers, together in one room, to forge new collaborations and enrich each other and the field of MS research as a whole. Over the course of the conference, I was able to reconnect with old colleagues, make new friends and learn about all of the exciting developments in MS research that are currently happening across Canada and the rest of the world.

endMS Conference trainees pose for a group photo

endMS Conference trainees pose for a group photo

The scientific program was brimming with content, and we heard from both local and international speakers – who are some of the leaders in their respective fields – provide an overview of advances in the field along with updates about their cutting-edge research. The conference was also an opportunity for a handful of research trainees to present their work in front of an audience of their peers and mentors; these trainee presenters, whose submitted abstracts were top-ranked by a peer review committee, represent some of the best and brightest young minds that will be carrying the torch of MS research for decades to come.

Each of the four plenary sessions focused on a separate theme, and the presentations discussed a broad range of topics that touched on nearly every imaginable aspect of MS, including:

  • Cognition and Behaviour, with insights into depression in MS, the effects of exercise on cognitive function, risk factors in pediatric-onset MS, and factors affecting nursing home entry among people living with MS.
  • Neuroimmunology, with breakthroughs in identifying targets that prevent entry of harmful immune cells into the brain and spinal cord, the different roles of B cells in MS, insights into translational research, and mapping the genetic risk factors for MS.
  • Repair and neuroprotection, with the latest research on the biology of oligodendrocytes (myelin producing cell), clinical trials investigating neuroprotection, the role of imaging techniques in gauging repair, and the effects of such factors as aging and exercise on remyelination.
  • Progressive MS, with discussions of the relationship between inflammation and progressive MS biology, drug repurposing, clinical trial design, and imaging techniques.

While the plenary presentations are an ideal platform for presenting research to a broad audience, poster presentations allow researchers a chance to interact one-on-one with their scientific peers to explain their study in detail, answer questions and gather valuable feedback for improving their study. This year, we had over 120 trainees and senior researchers giving poster presentations, and the research team and I had a chance to chat with many of the presenters and get an in-depth look at their findings. Check out our archived Facebook Live coverage at [link] to meet some of the talented poster presenters at the conference and catch a glimpse of their research.

A unique aspect of the conference was the trainee session, in which trainees are invited to take part in workshops that allow them to explore ways to apply their research knowledge and skills beyond the laboratory. The theme of this year’s trainee session was career development. The goal of the session was to showcase the range of career paths in science and healthcare available for trainees to pursue following their training. Trainees heard from an amazing panel of mentors hailing from academia, industry, government and health charities. Throughout the session, trainees had a chance to speak to the mentors and soak up their personal stories and wisdom, which in turn helped to shape their outlook on their own careers.

A personal highlight for me was our HEAR MS day. HEAR MS stands for Hope and Engagement through Accelerating Research in Multiple Sclerosis, and was a day dedicated to building and strengthening connections between research trainees and people affected by MS. While researchers are very familiar with MS through their work in the laboratory and careful analysis of data, it is people who live with MS and who have family members and friends with MS who experience the ups and downs of MS each day and know how MS affects them physically, mentally, emotionally, and socially.

Throughout HEAR MS Day, people affected by MS and trainees worked side-by-side on activities designed to challenge trainees to think about their research into a broader context by hearing, first-hand, the perspectives shared by people affected by MS. These conversations allowed researchers to gain a better understanding of MS at a personal level, and at the same time people affected by MS had a chance to learn about the various studies that are being led by promising young investigators. Ultimately the goal of HEAR MS Day was to foster dialogue between two communities, which will ultimately enrich the way research is conducted and translated into meaningful outcomes for people affected by MS.

As the endMS Conference wound down to a close, the experience left me feeling inspired and hopeful about the future of MS research and a better life for Canadians affected by the disease. I wanted to extend a warm thank you to all the incredible attendees who came down to Toronto from all corners of the country and beyond; the conference would not have been possible without you!

Have any questions and comments? Leave them below!

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Canada’s largest MS research conference hosted by the MS Society of Canada begins today! https://drkarenlee.ca/canadas-largest-ms-research-conference-hosted-by-the-ms-society-of-canada-begins-today/ https://drkarenlee.ca/canadas-largest-ms-research-conference-hosted-by-the-ms-society-of-canada-begins-today/#respond Tue, 06 Dec 2016 21:17:45 +0000 https://drkarenlee.ca/?p=1534 tapestry

The research team next to a beautiful tapestry created by Elizabeth Jameson

Today marks the first day of the 2016 endMS Conference in Toronto, ON. When I think back to the first conference hosted in 2007 in Banff, Alberta, I am truly amazed at how much this meeting has grown over the years. What began as a forum for trainees to present and gather feedback on their research, has expanded into a well-established scientific meeting that brings together over 200 MS researchers and clinicians from around the world. In fact, the endMS Conference is now the largest scientific conference focused on MS in Canada.

For those of you who are not familiar with the endMS Conference, it’s held every three years in different cities across Canada, and is hosted by the MS Society of Canada, endMS Research & Training Network, and MS Scientific Research Foundation. It’s a week-long meeting wherein researchers and clinicians come together and present the latest research findings, network and collaborate with other professionals in the field. Many great ideas come from face-to-face interactions among researchers, and so the MS Society is proud to be funding a forum that encourages this engagement, as well as provides young researchers the opportunity to form relationships with peers and meet senior MS research experts.

The 2016 endMS Conference program will include scientific presentations on topics such as cognition, progressive MS, repair, and inflammation, as well as poster presentations where researchers can visually display and answer questions about their research. There is also a day dedicated to people affected by MS where they will meet with trainees and exchange perspectives on how to incorporate the personal voice in research.

Stay tuned for live conference updates posted here, on my Twitter, and MS Society’s Facebook page!

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The faces behind the research: Spotlight on wellness and MS, Part III https://drkarenlee.ca/the-faces-behind-the-research-spotlight-on-wellness-and-ms-part-iii/ https://drkarenlee.ca/the-faces-behind-the-research-spotlight-on-wellness-and-ms-part-iii/#respond Wed, 23 Nov 2016 20:41:11 +0000 https://drkarenlee.ca/?p=1525 Last week, I featured a team led by Dr. Ann Yeh from SickKids Hospital who was awarded one of three Hermès Canada | MS Society Wellness Research Innovation Grants to develop a physical activity app for children and adolescents living with MS. In the last part of this series, we’ll set our sights back on Saskatchewan and focus on Dr. Katherine Knox, Associate Professor at the University of Saskatchewan, who is working collaboratively with community innovator Dalene Newton, Director of Brain Health, Rehabilitation, and Interprofessional Practice, at Saskatoon Health Region. Their project is titled “Web-based physiotherapy in moderate to severe MS”.

Meet the Researcher: Katherine Knox


Photo credit: Katherine Knox

How did you first become involved in the field of MS?

I volunteered at the MS Society when I was a medical student learning about a “Road to Wellness workshop” which was being offered at that time.  I had many questions from this experience meeting people with MS.  I eventually decided to pursue more training in Saskatoon, where there was opportunity to learn more about MS and work with those affected.

What do you enjoy most about working in the MS field? What are some challenges you have faced and how have those challenges shaped your research?

I enjoy working with people with MS because many are determined and creative.

One challenge is being able to reach people with mobility issues who live longer distances from centres with rehabilitation services.

Another challenge is helping people stay active with MS throughout the disease course. Physical activity options, which people may do in their own homes under the outreach guidance of an experienced physiotherapist, may help address both of these challenges.

What does wellness mean to you, and why is the study of wellness approaches and strategies an important priority in MS research?

To me, wellness means living life and enjoying it.

The study of wellness is a priority. We cannot always control disease but action towards improved wellness is still possible, even in the face of disease.

We need to understand how to tap into wellness individually for each person. This study explores an individualized approach to maintaining aspects of physical wellness.

Describe the importance of collaborating with a community innovator(s) or academic researcher(s). How will collaboration maximize the quality and impact of your study on wellness outcomes for people affected by MS?

Our community partner – Saskatoon Health Region – is crucial because if web-based-physiotherapy is liked and helpful to people with MS in SK or elsewhere, we will need the support of our health regions and physiotherapists to make it widely accessible.

Why is it important for people affected by MS to be meaningfully engaged throughout the research process? How does your study engage members of the MS community?

People affected by MS are the experts of the lived MS experience. This is why it is crucial that people with MS are engaged in defining the problems, testing possible solutions, and sharing what is learned.

People with MS in the UK have already worked with researchers to help design web-based guided physiotherapy. We are building on this work with the Lead UK researcher Lorna Paul and her team.

Now in Saskatchewan, people with MS will modify and participate in the program with the goal of making it even more suitable for people with mobility challenges.


Meet the Community Innovator: Dalene Newton


Photo credit: Dalene Newton

Describe why you became involved in this research study. What motivates you to learn more about wellness in people affected by MS?

My Director portfolio includes Rehabilitation Services and provides care and support to people with MS, therefore their wellness is important to understand. My clinical background includes a specific focus on neuro-rehabilitation; this patient population has always been a primary interest of mine.

Describe your role as a community innovator in this study. How will you work with your research partner to generate new knowledge and create wellness solutions for people affected by MS?

I will be interested to learn about the delivery of web-based physiotherapy, its benefits and limitations in relation to improving wellness for people affected by MS.

What does wellness mean to you? Why do you think it is important to study approaches to wellness that will improve the health and quality of life of people affected by MS?

Wellness, to me, implies a holistic approach to health and improved quality of life. I believe that it is important to learn how to support people to improve their quality of life related to their wellness.

What are you looking forward to most in carrying out this study? What challenges do you anticipate?

I look forward to learning about creative solutions for outreach Physiotherapy support for people affected by MS.

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The faces behind the research: Spotlight on wellness and MS, Part II https://drkarenlee.ca/the-faces-behind-the-research-spotlight-on-wellness-and-ms-part-ii/ https://drkarenlee.ca/the-faces-behind-the-research-spotlight-on-wellness-and-ms-part-ii/#respond Thu, 17 Nov 2016 20:46:02 +0000 https://drkarenlee.ca/?p=1518 As part of an ongoing series, I will be featuring interviews with the talented researchers and community innovators who were awarded one of three Hermès Canada | MS Society Wellness Research Innovation Grants to give you a glimpse at the amazing personalities and stories behind the research. Last week, I featured one of the teams from Saskatoon who have set out to study the impact of a Pilates program in people living with MS. This week, I’ll be featuring Dr. Ann Yeh,  who is an Associate Professor of Paediatrics at University of Toronto and Staff Neurologist at the Hospital for Sick Children, and community innovator Adam McKillop, President and CEO of Kite & Canary, the digital design and development company tasked with developing a physical activity mobile application (app) for children and adolescents living with MS. The study is titled “Development and Usability Testing of the ATOMIC (Active Teens MultIple sClerosis) Mobile App to Increase Physical Activity Levels in Youth with Multiple Sclerosis”

Meet the Researcher: Dr. Ann Yeh

Dr. Ann Yeh

Dr. Ann Yeh

How did you first become involved in the field of MS?

When I was training in pediatric neurology, I did not know that MS occurred in children. However, while I was still in training, my mentor and future colleague approached me about a population of children with inflammatory CNS disease in whom little was understood with regards to treatment, outcomes and risk of recurrence. The families faced uncertainty as did we as clinicians. Because of this, and growing knowledge that MS did occur in children, we started a center focused on children with MS and related conditions. We were fortunate to receive support from the NMSS in the US to build a pediatric MS center of excellence, where we were able to provide comprehensive clinical care to children with MS and start on our journey of understanding pediatric MS and related conditions.

What do you enjoy most about working in the MS field? What are some challenges you have faced and how have those challenges shaped your research?

Working in the MS field provides the unique opportunity to do clinically relevant research which brings together disparate fields including rehabilitation medicine, immunology, visual science, neurology, kinesiology, physics/imaging, cognition, and psychology, among other areas. The wonderful colleagues, patients and families that I have the privilege of working with are the best part of the field. The experience of learning together with a team of people allows us as a group to address the complex clinical problems that we face every day. In addition, my work helping families and children understand and manage MS and other neuroinflammatory disorders is hugely rewarding, as we are able to offer effective therapies to them, and a comprehensive team approach devoted to supporting the well-being of the child and family.

Perhaps the greatest challenge we face in the clinical care of children with MS is understanding and predicting the future for families, and helping youth to navigate their way through living with a chronic illness. We have found high levels of disease activity and high levels of depression and fatigue in the children we care for, yet knowledge about how to combat this in ways that can complement disease modifying therapies is scarce. These clinical observations have led to my focus on understanding outcomes in children with pediatric MS, the processes that drive those outcomes, and interventions that might help to improve those outcomes.

What does wellness mean to you, and why is the study of wellness approaches and strategies an important priority in MS research?

My understanding of wellness revolves around the notion of physical and emotional well-being, which may be supported and improved by lifestyle and other factors. Previous research has shown that pathophysiological and psychosocial benefits in MS may result from lifestyle changes, making it an important research priority with many policy and scientific implications.

We have learned over the years that while use of pharmacological agents may reduce disease activity in MS, multiple other factors contribute to experiences and symptoms related to MS. Indeed, in our work, we have found high levels of fatigue and depression in youth with MS, others have shown an association between obesity and MS disease activity, and we have found associations between depression, fatigue, disease activity and levels of physical activity. Importantly, many lifestyle factors may be modifiable, including the area on which we have focused this research, physical activity.

Finally, the most common questions that families and youth living with MS ask me revolve around lifestyle changes that can be made that might improve outcomes in MS youth: research in this area is in its infancy. We need to be able to provide clear and scientifically sound answers to these questions to families and the scientific community.

Describe the importance of collaborating with a community innovator(s) or academic researcher(s). How will collaboration maximize the quality and impact of your study on wellness outcomes for people affected by MS?

Our previous research has suggested that physical activity may have significant effects on MS disease activity and related symptoms in children with MS, and that levels of physical activity are very low in children with MS. Finding a way to improve well-being of children and youth with MS through physical activity is the goal of our current work. Our past experience and that of others told us that traditional ways of offering physical activity programs in a research setting, such as group based classes, were ineffective and unsustainable –i.e. did not lead to change in behavior after cessation of the intervention, especially for the pediatric population. We hoped to address this with our work.

While we had the idea to make a flexible, interactive app-based physical activity intervention which would be appealing to youth, we did not have the tools or expertise to create it. Developing this within the university would have meant a very long and perhaps less informed period of development. We were very fortunate to find Kite and Canary, our collaborator, whose specific expertise, development of medical based apps with previous experience with pediatric populations, who has taken us quickly and efficiently through the many complicated steps related to app development.

Why is it important for people affected by MS to be meaningfully engaged throughout the research process? How does your study engage members of the MS community?

People affected by MS are the consumers of medical interventions focused on improving MS outcomes. We strongly believe that while scientific knowledge is produced in a laboratory setting, the interventions associated with translating the scientific knowledge to practice must be informed by the needs and preferences of those who will ultimately use them. In our specific situation, the success of the intervention (i.e. successful uptake of the physical activity app) is dependent wholly on finding a method that is appealing to youth. For this reason, we have enlisted youth with MS to participate in interviews and groups that will review iterations of the app, and, as well, on our patient-centered steering committee.


Meet the Community Innovator: Adam McKillop, Kite & Canary

Adam McKillop

Adam McKillop

Describe why you became involved in this research study. What motivates you to learn more about wellness in people affected by MS?

As a digital design and development company, our team looks for new and challenging projects that provide valuable solutions. Our work will engage children and adolescents living with MS to help inform the development of a mobile application. We are excited to work on this research study to gain a better understanding of people with MS and learn about end-user preferences so we can design an app that meets user needs and expectations. We are excited to learn about young individuals with MS and how technology using a mobile app could help them improve their physical activity. This is a new demographic for our team and we feel very fortunate to work with such an incredible group!

Describe your role as a community innovator in this study. How will you work with your research partner to generate new knowledge and create wellness solutions for people affected by MS?

Our role is to provide digital design services (i.e., user-centred design) for this research study. The majority of this work will focus on defining the requirements and evaluating the general usability of the app. We will work closely with our research partners at SickKids Hospital to meet with participants as we complete the various design and usability assessments. This will help us create an app for youth with MS to improve their physical activity. This will ultimately contribute to improvements in their overall wellness. We will rely on the research partners to facilitate interactions with participants and help us understand the clinical management of this unique group.

What does wellness mean to you? Why do you think it is important to study approaches to wellness that will improve the health and quality of life of people affected by MS?

Wellness encompasses the physical, mental, and spiritual aspects of one’s life. It is important to consider the relationship between these aspects to improve quality of life and health. Given the chronic nature of MS, it is important to establish positive health behaviours early in life, including an active lifestyle. Therefore, it is absolutely necessary to study novel approaches to help youth with MS improve their physical activity. In turn, improved physical activity behaviours may help them improve their quality of life and health in order to live a fulfilling and successful life.

What are you looking forward to most in carrying out this study? What challenges do you anticipate?

We are looking forward to interacting with the young participants to help us create a worthwhile mobile app. Learning from participants and being guided by the amazing research partners at SickKids will strengthen the design process and ensure that we are on target with the end-users of the app. This will be absolutely critical to design an app for youth with MS. Some of the bigger challenges we may face include meeting the needs of a diverse population and ensuring that we are making an app that meets all the needs identified by the users. Logistically, trying to meet with different participants may also be a challenge – but thankfully technology can help facilitate these interactions!

Stay tuned for our next and last installment of this series!

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