Dr. Karen Lee's Blog https://drkarenlee.ca An Inside Look at MS Research Thu, 23 Feb 2017 21:44:52 +0000 en-US hourly 1 https://wordpress.org/?v=4.6.3 120353486 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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The faces behind the research: Spotlight on wellness and MS, Part I https://drkarenlee.ca/the-faces-behind-the-research-spotlight-on-wellness-and-ms/ https://drkarenlee.ca/the-faces-behind-the-research-spotlight-on-wellness-and-ms/#comments Thu, 10 Nov 2016 16:04:38 +0000 https://drkarenlee.ca/?p=1508 Today, the MS Society announced the three recipients of the Hermès Canada | MS Society Wellness Research Innovation Grant. Each grant recipient will receive $40,000 over one year to embark on a research study that will lead to a better understanding of wellness and how to integrate physical activity and rehabilitation approaches into MS care and lifestyle for people affected by MS. I’m very excited to see these grants out the door as they represent the culmination of more than a year of planning and consultation with the MS community. This included the valuable feedback on wellness priorities gathered through the MS Wellness Survey, the contribution of our community representatives on the independent review panel for the grants, and the ongoing involvement of people affected by MS in each of the projects as a central pillar of their community engagement strategies.

I’m also excited to learn more about the amazing people who have taken the reins on these studies. Each one of them brings to their study their unique expertise in wellness and/or MS, along with deep roots in their local communities, in a perfect mix that makes them well-positioned to tackle gaps in wellness faced by people affected by MS.

In this multi-part series, I will be featuring interviews with each of the researchers and community innovators leading their respective Hermès Canada | MS Society Wellness Research Innovation Grants to give you a glimpse at the amazing personalities and stories behind the research. This week, we’ll focus on Dr. Charity Evans, Professor of Pharmacy at the University of Saskatchewan, and Jana and Jason Danielson, co-owners of multidisciplinary health and wellness studio Lead Integrated Health Therapies, and their study titled “Determining the Impact of a Pilates Program in Multiple Sclerosis”

Meet the Researcher: Charity Evans

Photo credit: Saskatchewan Health Research Foundation

Photo credit: Saskatchewan Health Research Foundation

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

I first became involved in MS research when I started a postdoctoral fellowship with Dr Helen Tremlett at the University of British Columbia in 2010. Almost immediately after starting the fellowship I attended the endMS Summer School in Halifax which was my first major “introduction” to MS.

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 think I have most enjoyed how welcoming and supportive the MS community is. Individuals are willing to share their experiences and be actively involved in research, and the research community is extremely collaborative.

As a relative “newcomer” to the field of MS, I find that the rapid rate at which things are changing can sometimes make it challenging to keep up. However, I think that this is also a positive indicator of how research continues to advance towards finding a cause and eventual cure for MS.

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

As a pharmacist, it’s easy for me to focus on the importance of drugs for treating a certain disease or condition. Although we have several drug therapies available for the treatment of MS, they are not appropriate or effective for all individuals. Strategies that focus on individual wellness, such as diet and exercise, are other important tools available for helping to manage MS, and health in general.

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?

What most excites me about this study is the fact that it was envisioned and initiated by two community innovators who wanted to make a difference for individuals affected by MS. This study is a true partnership between academic researchers and community members, and because it is being conducted in the community, makes it that much easier to translate results directly to the people who will most benefit.

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

The involvement of individuals affected by MS is critical to ensuring the success of our study – who better to provide important insights into the feasibility and usefulness of a potential intervention than those who will be participating in, and ultimately benefiting from, the research.

Initially, two information sessions were held to introduce the idea of Pilates and MS to the MS community. Eleven individuals affected by MS, and the Senior Community Resources Coordinator from the Saskatoon MS Society office, attended the sessions. After the sessions, participants were asked to provide feedback related to the feasibility, logistics, and interest in a Pilates program specifically for individuals with MS; the response was overwhelmingly positive. From there, a pilot Pilates program was conducted over the summer where 9 participants provided direct feedback related to implementation of the exercises and modifications necessary for individual ability levels and symptoms. The plan is to also have one of the pilot participants continue to serve as the MS advisor throughout the study.


Meet the Community Innovators: Jana and Jason Danielson

Image Credits: Jana and Jason Danielson

Photo credit: Jana and Jason Danielson

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

Pilates is a form of movement that does not discriminate on the basis of age, gender, or ability – it is inherently that good.  We came across the work of a Pilates colleague in the US who, due to her own MS diagnosis , researched and developed an amazing resource for teaching movement to a body living with MS. 

We were intrigued to learn that many of the movements we teach did not have to be varied that much and we were confident that the mind body connection created, the neuromuscular benefits, the confidence with managing activities of daily living would be amazing for this population to experience.

The other reason we were motivated to learn more about this population is that we have achieved great success with a class we offer called Empower – which is a class designed for people who are currently or who have dealt with a cancer diagnosis.

We believe strongly that Pilates will fundamentally change the lives of our participants. 

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?

We strive to find ways to connect with the community and applying for this grant was a decision that was very easy for us to make. We hope to make Lead a ‘Centre of Excellence’ for movement and movement therapy.

We are excited to work with our research team to take our findings and transfer this learning into classes at Lead but also have a goal of creating a teacher training program for other Pilates instructors so that our findings can expand beyond Saskatoon. 

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 is a mindful state of being.  At Lead the definition of a ‘Lead Experience’ is to educate, inspire and move the bodies in front of us and when this happens, quality of life increases and that person can now enjoy a new perspective on their life.

Compared to other modes of movement and exercise, Pilates is still fairly untapped and there is not much published research in this area. We need to study this approach in order to truly understand the statistical significance that Pilates can have on a body with MS.  This will support the anecdotal, more qualitative information that we have received about Pilates and MS.

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

Looking forward to:

  • Seeing the changes in the participants’ bodies each week.
  • Gaining a better knowledge from an instruction perspective.
  • Being a part of cutting edge research.
  • Building relationships with our research partners.

Challenges: possibly recruitment, but I feel we have a solid plan and have many resources to get the word out.


Stay tuned for the next researcher / community innovator spotlight!

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Hack4Health: Innovative MS wellness solutions take centre-stage https://drkarenlee.ca/hack4health-innovative-ms-wellness-solutions-take-centre-stage/ https://drkarenlee.ca/hack4health-innovative-ms-wellness-solutions-take-centre-stage/#respond Fri, 04 Nov 2016 18:42:58 +0000 https://drkarenlee.ca/?p=1499 It feels like only yesterday that Team Tera Bio Solutions (TBS), a group of creative, young science and engineering students at University of Waterloo, were awarded $15,000 from the MS Society to create a technological concept and develop it into a wellness tool for people living with multiple sclerosis. The blueprint for this tool was borne out of Hack4Health, a “hackathon” based at University of Waterloo in September last year in which teams of students were given 36 caffeine-fueled hours to put their heads together and develop wellness solutions with the potential to improve quality of life for people living with MS or dementia. To guide their thought process, participants of Hack4Health relied on the wellness priorities expressed by the MS community, both through the MS Wellness Survey and through interacting with people living with MS who acted as mentors during the event. Fast forward one year, and Team TBS is a few steps closer to completing the prototype for its wellness concept. So what has Team TBS been working on since their project kicked off earlier this year, and what inspired them to pursue this approach in the first place?

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)

Technology is playing a greater role in the lives of people living with MS than ever before. Advances in technology and digital media – including mobile sensory technologies and social networking tools – are filtering into many facets of people’s lives, and the desire to integrate and exploit these technological tools to better track and manage the disease has been voiced by many in the MS community through the MS Wellness Survey. Nowhere is the potential for monitoring health and wellness outside of the clinical setting more promising than in the field of wearable sensory technology, which can bring together important functions like automated symptom monitoring, user-recorded wellness logging, and communication with an individual’s healthcare team – all into a small and portable package.

Team TBS, consisting of undergraduate students Denez Zahra Bokhari, Muhammad Tahsin Sharif, Abhinav Grover, and Muhammad Inzamam Tahir, latched onto the idea of a wearable wellness- and symptom-monitoring tool as a guiding principle of their project. Under the supervision of Dr. James Tung, Professor of Mechanical and Mechatronics Engineering at University of Waterloo and an expert in wearable health care devices, Team TBS has spent the last 6 months or so refining their concept into a testable prototype. The goal: to translate the prototype into a fully-formed product that will be available for people living with MS.

Team TBS describes their concept as an interactive software app that is integrated with an existing health monitoring wristband – the Microsoft Band – and makes full use of its functionality. This includes allowing users to track multiple physiological variables and log their wellness-related activities, along with automatically capturing contextual information like time and temperature. The app can detect several biological measures, including heart rate, skin temperature, pedometer (i.e., step count) and galvanic skin resistance, which is a widely-used measure of stress. The app also boasts a logging function that allows a user to record important information about their daily routine including diet and physical activity, symptoms, and drug administration along with any side effects. Together, this sensor and logging data is crunched together, streamed to a paired smart device such as a mobile phone, and integrated into graphs and tables that paint a complete picture of a user’s well-being. At the same time, the app stores this information and can relay it to a user’s health management team – including their caregiver, neurologist, and other healthcare practitioners like a physical therapist, dietician, etc. – to give them an in-depth glimpse into the user’s well-being in a real-world setting.

A cornerstone of the design and testing process has been a constant back-and-forth dialogue with the people who know MS best; namely, people living with the disease. Over the past few months, Team TBS have worked closely with people living with MS in the local community to pitch app design features, gather feedback and begin preliminary prototype testing. The team also connected with a local neurologist who helped them decide what type of data was important to collect and how that data could be integrated to construct a faithful picture of a user’s symptoms and well-being. Overall, the development of the concept has been a collaborative process from day 1, and the feedback from the patient and medical communities has been instrumental in informing the design aspects of the system.

Hack4Health returns this year to the University of Waterloo, kicking off tonight and continuing until Sunday. Much like last year, Hack4Health 2.0 will provide an exciting space for creative student “hackers” to create practical applications – whether they’re software, hardware or social solutions – for people living with MS or dementia. Our research team will be on-site Saturday and Sunday to provide mentorship to the hackers on MS wellness priorities, judge the project concepts, as well as keep our audience in the loop about the exciting concepts being developed. Follow along on Facebook and Twitter (@Dr_KarenLee) for up-to-the-minute updates from the event.

To learn more about Team TBS and the faces behind the project, head over to the MS Society blog and read our interview with the team about their concept and its impact on people living with MS, as well as a spotlight on team member Denez Bokhari. You can also check out the video below to get a behind-the-scenes glimpse into the project.

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Late-breaking ECTRIMS 2016 session unveils new biomarkers, real-world treatment comparisons, and clinical trial results https://drkarenlee.ca/late-breaking-ectrims-2016-session-unveils-new-biomarkers-real-world-treatment-comparisons-and-clinical-trial-results/ https://drkarenlee.ca/late-breaking-ectrims-2016-session-unveils-new-biomarkers-real-world-treatment-comparisons-and-clinical-trial-results/#respond Wed, 05 Oct 2016 20:09:38 +0000 https://drkarenlee.ca/?p=1494 Each year ECTRIMS ends with a bang as late-breaking research news is presented first thing in the morning. Presenters at the late-breaking news session deliver the newest key findings of pivotal studies and clinical trials. At the session, we heard about a new potential biomarker that can help evaluate the success of progressive MS trials, the effectiveness of available MS disease-modifying therapies in the real world, and topline results from clinical trials of emerging progressive MS and symptom management treatments. Read on for highlights from the ECTRIMS late-breaking news session.


New data positions neurofilament light chain as strong biological indicator of MS disease outcomes

Neurodegeneration is a major component of multiple sclerosis, particularly in progressive MS where ongoing, irreversible neurodegeneration contributes to disability. When nerves are damaged, proteins that make up the nerves are released into the cerebrospinal fluid (CSF) and blood. Dr. Jens Kuhle from Basel, Switzerland presented a technique that his team used to measure levels of a protein called neurofilament light chain (NfL) in blood samples from people living with MS who were part of FREEDOMS – a phase III clinical trial for fingolimod. His research team investigated whether blood NfL levels differed between people with MS and healthy controls, and if they can inform clinical outcomes. They found that levels of blood NfL were significantly higher in people with relapsing remitting MS compared to healthy controls, and were positively correlated with the number of lesions, size of lesions, relapses, and EDSS, a measure of disability. The data presented showed that NfL predicted brain atrophy rates, and those treated with fingolimod had lower blood NfL levels than those who were not treated with fingolimod. Together these findings position blood NfL as a promising, sensitive biomarker for neurodegeneration that offers a faster and less invasive alternative to sampling from the CSF.

Phase III clinical trial results for experimental progressive MS treatment siponimod

Dr. Ludwig Kappos presented the most recent results from EXPAND – a phase III double-blind, randomized, placebo-controlled clinical trial investigating a treatment called siponimod developed by Novartis. Siponimod works by keeping immune cells inside the lymph nodes, preventing them from entering the brain and spinal cord where they can cause damage to myelin. Siponimod can also enter the brain and spinal cord where it is thought to promote repair and neuroprotection. As the largest secondary-progressive MS trial to date, EXPAND involved 1,651 participants with SPMS across 31 countries who received either oral siponimod at a dose of 2mg once daily, or placebo. Dr. Kappos reported that treatment with siponimod reduced the risk of disability progression by 21% when looking at EDSS changes over 3 months, and by 26% when looking at EDSS changes over 6 months. Positive effects were observed for both those who had experienced prior relapses as well as those without prior relapses. The strongest effect was seen in those with very active disease and lower EDSS at baseline. Treatment with siponimod also resulted in significant reductions in annual relapse rate and magnetic resonance imaging (MRI) measures such as changes in brain atrophy and lesion volume. However, there was no significant difference between treatment and placebo groups on performance in the timed 25-foot walk test. The safety profile of siponimod was in line with similar therapies. Analysis of the data is still ongoing, and we’ll be keeping a close eye on new findings as they become available.

Real-world data from MS registry allows researchers to compare treatments

As more treatments are approved for MS, it becomes increasingly important for clinicians to rely not only on clinical trial to inform treatment decisions, but also “real world” evidence once these treatments are available to thousands of people. Dr. Tomas Kalincik from Australia presented 5-year treatment outcome data for alemtuzumab and compared it to data on natalizumab, fingolimod, and interferon beta-1a. Researchers collected data from MSBase – a large repository of MS data collected by neurologists around the world and used for clinical and research purposes.  Information from MSBase on close to 4,000 patients was retrospectively analyzed. Patients with matching demographic and disease characteristics were compared to determine how well they did on the treatments of interest. Dr. Kalincik reported that, compared to interferon, alemtuzumab was associated with fewer relapses, although overall there was no change in the risk of disability progression. However, those treated with alemtuzumab who had highly active MS were more likely to experience a reduction in disability progression compared to those on interferon. Researchers also found that alemtuzumab was associated with fewer relapses when compared to fingolimod, although there was no significant difference in disability progression. Finally,there was no significant difference in relapses observed between those treated with alemtuzumab versus natalizumab, but natalizumab was associated with greater reduction in disability in the first year of treatment. Overall, the results of this study, which captures real world data on treatment responses, replicated what was observed in clinical trials comparing alemtuzumab to interferon beta-1a, and provides strong evidence demonstrating a superior effect on reducing relapses when compared to fingolimod. Alemtuzumab and natalizumab showed similar effects on relapse activity, although natalizumab was associated with a greater short-term reduction in disability.

Lifestyle and environmental risk factors for MS explored in CIS cohort

Dr. Maria Zuluaga from Barcelona presented data on the influence of vitamin D deficiency and smoking on risk of developing confirmed MS and disability progression among individuals with early signs of MS (clinical isolated syndrome or CIS). Her team collected clinical and imaging data from a large CIS cohort in Barcelona established in and followed from 1995 onward. Vitamin D and cotinine levels (the latter being a biomarker for smoking) were analyzed in blood serum samples of people following diagnosis of CIS. In 503 patients who were studied, the researcher reported that 72% had low vitamin D levels (less than 20ng/ml). Levels of otinine in the “active smoker” range were present in 43% of patients. Overall, they found that vitamin D deficiency was not associated with an increased risk of developing confirmed MS; however, severe vitamin D deficiency (less than 8ng/ml) was associated with disability progression in patients with CIS. They also reported that non-smokers with CIS had lower risk of disability progression, but were not at lowered risk of developing confirmed MS. Overall their research suggests that smoking and low vitamin D levels independently contribute to disability accumulation in people with CIS.

Improvements in walking ability observed in clinical trial for prolonged-release fampridine

Dr. Jeremy Hobart from the UK shared results from ENHANCE, a clinical trial investigating whether prolonged-release fampridine can bring about sustained, clinically meaningful benefits in people with MS. Fampridine is an oral treatment that has been shown to improve walking in people living with MS, although questions remain about whether these improvements are clinically meaningful. ENHANCE is the longest randomized, phase III trial of fampridine to date. It involved 636 relapsing-remitting and progressive MS patients (average EDSS of 6.0), who were given either 10mg fampridine twice a day or placebo. The researchers looked at the proportion of people who showed improvements in the 12-item MS Walking Scale (MSWS-12) score (a self-reported measure of walking ability) over 24 wks. They also looked at secondary measures of mobility, balance, and upper limb function among the treatment and placebo groups. Results of the trial revealed clinically meaningful improvements in walking in 43% of people treated with fampridine, versus 34% of people treated with placebo. Significant differences were also observed for walking speed, upper limb function, and self-reported physical impact in the treatment group versus placebo. No new safety concerns were reported.


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Poster session at ECTRIMS 2016 covers the gamut of wellness and symptom management research https://drkarenlee.ca/poster-session-at-ectrims-2016-covers-the-gamut-of-wellness-and-symptom-management-research/ https://drkarenlee.ca/poster-session-at-ectrims-2016-covers-the-gamut-of-wellness-and-symptom-management-research/#respond Fri, 23 Sep 2016 21:13:56 +0000 https://drkarenlee.ca/?p=1489 While platform presentations tend to get all the glory and attention at scientific conferences, I like to think of poster presentations as the unsung heroes that cover an enormous breadth of topics and give researchers at all stages of their careers an opportunity to showcase their research. This year’s ECTRIMS conference saw a record-breaking 1,985 abstract submissions, the majority of which were poster presentations spanning topics as diverse as immune mechanisms and remyelination, symptom management approaches, imaging techniques, biomarker discovery, and findings from clinical trials, to name a few. In this post, I’d like to highlight just a few of the posters I came across that focused on how factors like diet, physical activity, mood and fatigue can play a role in the lives of people living with MS and allied diseases.

Poster hall at ECTRIMS 2016

Poster hall at ECTRIMS 2016

Dr. Celia Oreja-Guevara (Hospital Clinico San Carlos, Madrid, Spain) and her team asked the question: can stress management, particularly mindfulness-based techniques, improve quality of life and reduce depression, anxiety and fatigue in people living with MS? In a randomized clinical trial involving 58 people living with relapsing-remitting MS, 31 participants underwent a mindfulness-based stress reduction program over 8 weekly, 1.5 hour sessions, while 27 underwent a psychoeducative program that included different relaxation techniques. Dr.  Oreja-Guevara’s team found that mindfulness-based stress reduction interventions were superior to psychoeducative programs in bringing about benefits in quality of life (including depression, anxiety and vitality), while both interventions were beneficial in reducing fatigue.

Past research has shown that exercise and physical activity alleviate fatigue in people living with MS, although the reason for this has been a mystery. In an attempt to answer this question, MS Society-funded Postdoctoral Fellow Dr. Nadine Akbar (Kessler Foundation, West Orange, USA) examined the effects of resistance exercise in people living with MS on both fatigue and changes in the connection between nerve cells in certain areas of the brain. In this pilot study, 6 highly fatigued people with MS were assigned to a 4-month strength training program and 4 people carried out an active stretching program. Using functional magnetic resonance imaging, Dr. Akbar was able to demonstrate that resistance exercise strengthened the nerve cell connections between certain areas of the brain believed to be involved in fatigue, providing preliminary evidence of the biological mechanisms behind the beneficial effects of exercise on fatigue. Further research in a larger group of people is ongoing in order to confirm these results.

Few studies to date have examined how cognitive function is affected in people living with Neuromyelitis Optica Spectrum Disorders (NMOSD). Dr. Anna Combes (The University of British Columbia) and her team investigated whether depression, anxiety and fatigue can affect executive function – a process that underlies everyday functions like planning tasks, following instructions and scheduling appointments – in people living with NMOSD. In a group of 23 participants with NMOSD and 12 healthy controls, the research team found that the NMOSD group did not perform as well overall on executive function tasks. Although people with NMOSD had relatively higher levels of fatigue and depression, these were not associated with changes in executive function, suggesting that there are other unknown factors that may be responsible for changes in cognitive function.

One topic that continues to generate a great deal of debate is the effect of different types of diet on MS disease activity. As part of the multicenter, U.S. Pediatric MS Network led by Dr. Emmanuelle Waubant (University of California San Francisco), 219 children and adolescents with early pediatric relapsing-remitting MS completed a survey assessing their dietary habits. The research team then compared dietary factors like fat, vegetable, fibre, fruit, carbohydrate, protein, sugar, dairy and iron intake and associated them with MS relapse rates. They found that overall, each 1% increase in energy intake from fat resulted in a 4% increase in the risk of relapses. On the other hand, participants who ate more vegetables generally had a lower risk of relapses compared to those who didn’t. Although more research is needed in the form of interventional trials, this study may pave the way for dietary recommendations and guidelines for youth living with MS.

Stay tuned for more ECTRIMS recaps, and leave your questions and comments below.

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