Dr. Karen Lee's Blog https://drkarenlee.ca An Inside Look at MS Research Wed, 08 Aug 2018 20:23:10 +0000 en-US hourly 1 https://wordpress.org/?v=4.6.12 120353486 3rd Scientific Congress of the Progressive MS Alliance: Making a difference through rehabilitation and Symptom Management (Part 3) https://drkarenlee.ca/3rd-scientific-congress-of-the-progressive-ms-alliance-making-a-difference-through-rehabilitation-and-symptom-management-part-3/ https://drkarenlee.ca/3rd-scientific-congress-of-the-progressive-ms-alliance-making-a-difference-through-rehabilitation-and-symptom-management-part-3/#respond Wed, 08 Aug 2018 20:23:10 +0000 https://drkarenlee.ca/?p=1846 While researchers are forging ahead with great ideas in symptom management and rehabilitation, we also heard about the complexity of factors that affect an individual with multiple sclerosis (MS) that need to be kept in consideration when developing new projects and initiatives. Therefore, in the third and final blog series on the progressive MS Alliance meeting, I will be highlighting fatigue management, understanding how comorbidities impact MS, and the mood and resilience of people living with MS.

Fatigue Management: Dr. Marcia Finlayson (Queen’s University, Canada)

Dr. Marcia Finlayson

Dr. Marcia Finlayson

Nearly two-thirds of people with MS experience fatigue, which can negatively impact employment, quality of life, and ability to engage in a full range of daily activities. There are limited resources available to help people manage fatigue in MS. To target this symptom, Dr. Marcia Finlayson’s group developed MS INFoRM (Multiple Sclerosis: An Interactive Fatigue Management Resource), a self-directed resource that allows people with MS to take a personalized and active approach to learn about and manage their fatigue. The contents of MS INFoRm address the sources of fatigue, ways of monitoring fatigue, and strategies to reduce fatigue. This includes individualized training in problem-solving, prioritizing, and energy management. The next steps in Dr. Finlayson’s project are to broaden access to the intervention and develop and test new strategies and delivery options.  Dr. Finlayson’s MS INFoRm study is supported by the MS Society of Canada and she is looking for participants diagnosed with MS. If interested, please visit the study website for additional details.

 Comorbidities: Dr. Ruth Ann Marrie (University of Manitoba, Canada)

Dr. Ruth Ann Marrie

Dr. Ruth Ann Marrie

Co-existing health conditions, also called comorbidities, can affect thinking and memory in persons with multiple sclerosis (MS). Dr. Ruth Ann Marrie highlights the most common comorbidities in MS and the importance of studying them. Some of the most common comorbidities are depression, anxiety, hypertension, hyperlipidemia, heart disease, and diabetes. A comorbidity such as depression is associated with cognitive dysfunction whereas vascular comorbidities such as high blood pressure and diabetes may accelerate MS progression. Major priorities in this field include determining if interventions differ in comorbid conditions and evaluating mechanisms that impact comorbidities.

Mood and Resilience: Dr. Kevin Alschuler (University of Washington, United States)

Dr. Kevin Alschuler

Dr. Kevin Alschuler

There are many challenges faced by an individual diagnosed with MS. MS can make an individual feel a constant sense of loss and grief that can ultimately feel isolating. This is where the concept and principles associated with resilience, highlighted by Dr. Kevin Alschuler, come into play.

Resilience is the ability of an individual to bounce back when faced with major life stressors and is associated with the quality of life. It is difficult to define what it means for an individual diagnosed with MS to be resilient to the challenges they face. While some may feel that bouncing back from a low is considered being resilient, others may feel that resilience is living well in the face of challenges. Factors associated with facilitating resilience include social connections (family, friends, peer support), having meaning in life (family, hobbies), planning (routines, simplifying life), and physical wellness (exercise, stress reduction). On the other hand, barriers to resilience include negative thoughts and feelings, social barriers, and physical fatigue.

Dr. Alschuler concluded by highlighting a program developed by the U.S. MS Society, called Everyday Matters, as a way of promoting resilience in individuals with MS. This program teaches skills in positive psychology including goal setting, happiness habits, retraining cognitions, building social connections, removing barriers to action and gaining positive momentum. An individual that can overcome the psychological challenges to have a positive outlook is more apt to gain from the symptom management and rehabilitation strategies aimed at improving quality of life.

The 3rd Scientific Congress of the International Progressive MS Alliance was a great success! After all the presentations, the International Progressive MS Alliance will continue to develop initiatives in the three key priority areas: (1) understanding progression; (2) accelerating clinical trials; and (3) enhancing well-being. The congress meeting set the stage for establishing collaborations and sharing ideas so that research programs could be developed that would have the greatest impact on an individual diagnosed with progressive MS.

Have any questions about this fascinating meeting or the topics that were discussed? Leave a comment below!

Read the first and second blog posts in this series.

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3rd Scientific Congress of the Progressive MS Alliance: Making a difference through rehabilitation and Symptom Management (Part 2) https://drkarenlee.ca/3rd-scientific-congress-of-the-progressive-ms-alliance-making-a-difference-through-rehabilitation-and-symptom-management-part-2/ https://drkarenlee.ca/3rd-scientific-congress-of-the-progressive-ms-alliance-making-a-difference-through-rehabilitation-and-symptom-management-part-2/#respond Tue, 31 Jul 2018 13:50:14 +0000 https://drkarenlee.ca/?p=1833 Taking the lessons learned from stroke research (part 1) and moving forward to develop new projects and programs is important for the advancement of research in rehabilitation and symptom management in progressive multiple sclerosis (MS). For this post, I’ll be highlighting areas that garnered interest at the Progressive MS Alliance meeting such as brain stimulation, robotics, exercise, cognition, and patient perspectives.congress 1

Brain Stimulation: Dr. Jonathan Downar (University Health Network, Canada)

Promoting brain plasticity is key for the reorganization of connections in the brain cells, as I highlighted in the previous post. A more “plastic” brain may be more receptive and benefit more from rehabilitation. A noninvasive approach to stimulate brain plasticity may be through brain stimulation.

There are two types of brain stimulation: magnetic and direct current. Magnetic stimulation refers to the placement of large coils above the scalp that send short magnetic pulses to nearby brain cells, while direct stimulation requires the placement of electrodes on the desired area of the scalp and stimulates deeper regions of the brain.

Dr. Jonathan Downar from the University Health Network highlighted some studies that have shown the promise of brain stimulation in conditions such as cognitive impairments, anxiety, and depression. Knowledge from these studies has improved the use of brain stimulation technique so that specific regions of interest can be targeted. The goal of research moving forward, particularly in MS, is to better target and stimulate the regions impacted by MS and eventually to tailor treatments to meet individual needs – with the hope of changing the properties of the brain to form new connections to replace old ones that may not work as well.

Robotics: Dr. Shane Saunderson (University of Toronto, Canada)

Chronic conditions such as MS put a lot of pressure on the healthcare system, particularly for long-term care facilities. Dr. Shane Saunderson from the University of Toronto has been developing socially assistive robots with a human-like demeanor to assist in simple chores and supplement support from caregivers with the goal of ultimately improving the quality of life for people affected by MS. These assistive robots help individuals with decision-making, reminders, providing companionship and cognitive stimulation. For example, the team has programmed a robot to help decide the day’s clothing choices through the options available in the wardrobe.

Exercise: Dr. Ulrik Dalgas (Aarhus University, Denmark), Dr. Stefan Gold (Charité – Universitätsmedizin Berlin, Germany), and Dr. Rob Motl (University of Alabama, United States)

Through research in animal models of MS, there is evidence to support the benefits of exercise. Dr. Stefan Gold from Charité – Universitätsmedizin Berlin presented research that indicated that exercise results in the decreased release of inflammatory molecules in the body, reducing clinical score and disruption of the blood-brain barrier in animal models of MS. The caveat of many of these studies in animal models of the disease is that exercise is given prior to induction of MS, making the results of these studies less translatable to the human population.

Dr. Ulrik Dalgas

Dr. Ulrik Dalgas

However, while clinical trials on exercise have been small and heterogeneous in nature, Dr. Dalgas from Aarhus University mentions that exercise can activate nearly every organ and organ system in the human body. Clinical trials looking to the impact of exercising for those diagnosed with relapsing-remitting MS have, in fact, shown an improvement in physical abilities, cognition, and quality of life. While only a handful of studies have been performed in progressive MS, similar and promising effects are witnessed.

Dr. Rob Motl

Dr. Rob Motl

Dr. Rob Motl from the University of Alabama shed light on the future of exercise and MS. For one, exercise can be viewed as a powerful “medicine” in progressive MS. However, there is the need to vet other diseases and use them as a guide for the development of new projects in exercise and MS. Furthermore, disability in MS worsens with age, therefore the aging population needs to be kept in consideration when developing exercise paradigms. Finally, when, what and how much exercise needs to be identified for each individual and potentially a synergistic approach of combining exercise and other interventions would be best for optimizing outcomes.

 Cognition: Dr. John Deluca (Kessler Rehabilitation Institute, United States) and Dr. James Sumowski (Mt. Sinai School of Medicine, United States) 

Dr. John Deluca

Dr. John Deluca

Cognitive dysfunction affects nearly fifty per cent of individuals living with MS, predominantly impacting information processing and speed, learning and memory, executive function and perceptual processing. Drs. James Sumowski and John Deluca presented on the benefits of rehabilitation strategies on cognitive issues. While small trials for cognitive rehabilitation have shown activation of brain regions important for encoding of memories, and improved behavioural performance on processing speed, memory, and reasoning, there is a need for more randomized clinical trials that predefine their inclusion criteria and outcomes. Furthermore, like exercise, we need to understand and define who, when and what “dosage” of cognitive rehabilitation should be administered.

Patient Reported Outcomes: Dr. Giampaolo Brichetto (Italian MS Society, Italy) and Dr. Robert McBurney (Accelerated Cure Project for MS, United States)

Dr. Giampaolo Brichetto

Dr. Giampaolo Brichetto

Patient-reported outcomes (PRO) measure aspects of an individual’s health in relation to their quality of life, symptoms, and mental/social health, just to name a few. The goal of PROs is to understand and incorporate patient need and perspectives when developing and delivering therapies aimed at improving care. Whereas clinical trials for disease-modifying therapies are highly regulated, well-funded, with standard outcomes measures such as annualized relapse rates, trials looking at symptom management and rehabilitation require diverse outcome measures. PROs could provide insights on how the intervention contributes to the quality of life from the perspective of an individual with MS. There is a need to develop coordinated, multi-stakeholder, collaborative initiative for harmonization of PROs in MS so that relevant PROs can be incorporated into clinical practice.

Stay tuned for the next and final part of the blog series on the Progressive MS Alliance meeting focused on enhancing well-being.

Have an area of interest from the topics listed above? Let us know by leaving a comment below.

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3rd Scientific Congress of the Progressive MS Alliance: Making a difference through rehabilitation and Symptom Management (Part 1) https://drkarenlee.ca/3rd-scientific-congress-of-the-progressive-ms-alliance-making-a-difference-through-rehabilitation-and-symptom-management-part-1/ https://drkarenlee.ca/3rd-scientific-congress-of-the-progressive-ms-alliance-making-a-difference-through-rehabilitation-and-symptom-management-part-1/#comments Tue, 17 Jul 2018 12:35:49 +0000 https://drkarenlee.ca/?p=1822 pic 1

“The whole is greater than the sum of its parts,” quoted by Aristotle and reiterated by Dr. Anthony Feinstein, a neurologist at Sunnybrook Hospital in Toronto and co-chair of the 3rd Scientific Congress of the Progressive MS Alliance.

This quote speaks to the holistic culture of the meeting, which brought together global leaders in the field to assess the challenges of progressive multiple sclerosis (MS) research – with a particular focus on rehabilitation and symptom management. With over 220 participants from 16 countries, this was the largest Congress to date for the Alliance. Throughout the week, researchers and clinicians provided their insights on lessons that can be learned from other conditions such as stroke and spinal cord injury, and shared their research on symptom management and rehabilitation – including brain stimulation, robotics, patient perspectives, exercise and cognition, and how they could be applied specifically in MS.

pic 2

While researchers are forging ahead with great ideas and projects, presentations also highlighted some elements to keep in consideration when designing new research initiatives such as managing fatigue, understanding how comorbidities impact MS, and the mood and resilience of people living with MS. There was a genuine interest and enthusiasm on the power of rehabilitation and symptom management to be part of overall care and treatment for progressive MS. There was also a clear recognition of the importance of working across disciplines and using the research work done in other diseases as building blocks to make more rapid advances.

pic 3To give a detailed overview of the Congress, I’ll be dividing all that we learned into three blogs. The first will focus on the lessons learned from the field of stroke and stroke recovery. This will be followed by a second post on how we can take the lessons from stroke and move forward to develop new strategies for MS. In this post, I’ll be talking about topics such as brain stimulation, robotics, patient perspectives, exercise, and cognition. Finally, in the third and final installment of this series, I’ll wrap everything up by discussing what the research community needs to keep in consideration when developing new research initiatives and projects in the field of rehabilitation and symptom management.

Lessons learned from stroke

pic 4Dr. Nick Ward, a professor at the University College London, and Dr. Michelle Ploughman, a professor at the Memorial University of Newfoundland, were able to provide insights on what they have learned from stroke and stroke recovery research, and what MS researchers can draw from this research.

When it comes to research in exercise and rehabilitation, nearly five times more projects have been conducted in the stroke field than in MS research. A stroke is the results of poor blood flow to an area in the brain which results in the death of brain cells. Depending on the area in the brain where the stroke occurs, it can affect mobility, ability to care for yourself, cognitive function, and speech, just to name a few—some of the same symptoms experienced with those diagnosed with MS. Therefore, strategies and lessons learned from stroke research may be applicable to MS. Researchers in the stroke field have navigated through many areas focused on rehabilitation to find out what works and what doesn’t work, as well as which direction needs consideration. This means that when designing new research projects in MS important lessons can be taken from a field such as stroke, including identifying the areas that need to be considered in MS, such as:

  • A need to understand when it’s best to intervene with rehabilitation and symptom management strategies—whether that’s immediately after a relapse, at the end of a relapse or at a much later date.
  • Develop strategies that have the ability to promote plasticity. Plasticity means that our brain has the ability to change throughout life by reorganizing itself by forming new connections between brain cells (neurons). Therefore, in a condition such as MS, where signals from the brain to the body are interrupted due to the damage of myelin, creating new connections that would still allow proper signaling to the body may be essential.
  • Develop personalized rehabilitation programs that have task-specific This means to look at each person living with MS individually, identify the challenges they are facing, and target rehabilitation options to reduce these challenges. For example, a stroke event leads to functional impairment on one side of the body. Therefore, research is looking into constraining the unimpaired side (or arm) so that the impaired arm is forcefully used which may allow for improvement in function.
  • Identify the dosage of training that is best to restore function. How much rehabilitation is needed? At what intensity? How frequently? All these questions need to be addressed to understand the optimal dosage for functional recovery in rehabilitation.
  • Development of practice guidelines which are general overarching rules through which researchers can abide by when developing research projects. These guidelines allow researchers to make connections in research and identify conclusions that would otherwise be difficult due to the heterogeneity of research projects.
  • Identify biomarkers that better predict disease progression. For example, the International Progressive MS Alliance is already supporting a study by Dr. Doug Arnold from the Montreal Neurological Institute at McGill University. Dr. Arnold and his team of collaborators are developing cutting-edge magnetic resonance imaging (MRI) biomarkers that signal disease progression, so they can be used in early phase clinical trials of progressive MS treatments. Similar strategies would need to be developed for the field of rehabilitation.

Ultimately, when looking at rehabilitation in MS, a single intervention may not work to improve symptoms – so more synergistic approaches are needed. Whether it’s strategies that combine both physical exercise and cognitive rehabilitation, or methods to manage a symptom while a rehabilitation regime is introduced, combinations of  therapies are thought to have an additive effect when improving physical, emotional, and neurological function in MS.

Which of these areas do you think are important to implement? Stay tuned for part two of the blog series where I talk about how lessons from stroke will be applied to different areas focused on rehabilitation.

Learn more about the International Progressive MS Alliance.


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Faces Behind the Science: Diane Nakamura https://drkarenlee.ca/faces-behind-the-science-diane-nakamura/ https://drkarenlee.ca/faces-behind-the-science-diane-nakamura/#respond Thu, 31 May 2018 19:54:18 +0000 https://drkarenlee.ca/?p=1816 Research Profile- Diane Nakamura

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Incidence and Prevalence: What do they mean, how new numbers are identified and why they are important? https://drkarenlee.ca/incidence-and-prevalence-what-do-they-mean-how-new-numbers-are-identified-and-why-they-are-important/ https://drkarenlee.ca/incidence-and-prevalence-what-do-they-mean-how-new-numbers-are-identified-and-why-they-are-important/#comments Wed, 30 May 2018 11:47:54 +0000 https://drkarenlee.ca/?p=1809 Incidence and prevalence are two terms that are frequently used in epidemiology but are often mixed up or used incorrectly. Epidemiology is a branch of research that studies the distribution and determinants of health and illness within populations. Data generated from epidemiological research informs public health and can help understand the history of a disease and determine who is at risk of developing a disease. Distinguishing these two terms is important when discussing the patterns, causes, and effects of MS in the population.

What do incidence and prevalence mean?

Although incidence and prevalence are both measures of how a disease affects a population, they have very different meanings. Incidence is a measure of the number of new cases (newly diagnosed) of a disease or condition in the population during a specific period of time, usually a year.

Prevalence, on the other hand, is a measure of the total number of people living with a disease or condition in a population. In other words, prevalence is like taking a snapshot of a disease or condition to see how widespread it is in a population at a given time, regardless of whether the cases of disease are new or diagnosed at some point in the past.

What’s the challenge in obtaining these estimates?

Like many other chronic conditions, it is a challenge to have accurate, up-to-date incidence and prevalence rates for MS. Why? Well, there are different ways of figuring out prevalence and incidence rates.  One method is to use surveys, such as Statistics Canada’s Canadian Community Health Survey (CCHS) which randomly selects people in a population so that the group selected is representative of the whole population in terms of age and sex.  In addition to various other questions, the CCHS survey asks respondents to report on the number of people in the household who are diagnosed with MS.  Another method to measure incidence and prevalence rates is through the use of registries (databases). When someone is diagnosed with MS, they are entered in to a registry and the information is tracked. Finally, a third way to measure incidence and prevalence rates is through information generated by health claims, where people diagnosed with MS are identified through health care system databases.

Each of these methodologies can produce slightly different estimates of incidence and prevalence rates in MS— which makes collecting an accurate representation of this information in a population quite challenging and difficult to interpret!

How are the newest rates of MS identified and what do they mean?

Canada has one of the highest rates of MS in the world, a fact that becomes strikingly evident when you look at our epidemiological data.  The method used to calculate the incidence and prevalence rates of MS in 2014-2015 reported that more than 77,000 Canadians are living with MS; this estimate was recently released by Public Health Agency of Canada using the Canadian Chronic Disease Surveillance System (CCDSS) and allows us to calculate the nationwide prevalence and incidence of MS using health data claims. These estimates also mean that approximately 1 in every 385 Canadians are living with MS and an estimated 11 Canadians are diagnosed with MS every day.

These numbers were based on the following process:

i and p
So, are these new numbers reliable? The newer numbers may be lower than those previously reported but over the course of many years, using health claims data will capture nearly everyone living with MS. Although not everyone may visit their doctor every year, over the course of their lifetime an individual living with MS will have paid at least one visit to their doctor or a hospital, allowing this system to capture them in the incidence and prevalence rates for MS.

Tracking the incidence and prevalence rates of MS is important. These fundamental pieces of information inform us of the needs of the community and assist in identifying the risk of developing MS. For example, if there is an increase in the number of newly diagnosed cases of MS in Canada, it means that the risk of developing MS is increasing. Population statistics like these are critical for researchers to understand how MS impacts a population and to further pursue work into the potential causes and risk factors underlying MS in that population. Prevalence rates are important as they help inform the Canadian healthcare systems, government policies and programming and patient group organizations such as the MS Society of Canada about the medical, social and financial needs of individuals living with MS.


Canadian Chronic Disease Surveillance System 2000/2001-2013-2014

Canadian Chronic Disease Surveillance System Public Health Infobase

Prevalence and Incidence of MS Infographic

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Faces Behind the Science: Kate Parham https://drkarenlee.ca/faces-behind-the-science-kate-parham/ https://drkarenlee.ca/faces-behind-the-science-kate-parham/#respond Mon, 28 May 2018 17:06:52 +0000 https://drkarenlee.ca/?p=1804 Research Profile- Kate Parham

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Faces Behind the Science: Ana Citlali Márquez https://drkarenlee.ca/faces-behind-the-science-ana-citlali-marquez/ https://drkarenlee.ca/faces-behind-the-science-ana-citlali-marquez/#respond Tue, 22 May 2018 17:59:15 +0000 https://drkarenlee.ca/?p=1798 Research Profile- Ana Citlali Marquez

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Faces Behind the Science: Kevin Thorburn https://drkarenlee.ca/faces-behind-the-science-kevin-thorburn/ https://drkarenlee.ca/faces-behind-the-science-kevin-thorburn/#respond Fri, 18 May 2018 13:38:52 +0000 https://drkarenlee.ca/?p=1793 Research Profile- Kevin Thorburn

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Faces Behind the Science: Evelyn Peelen https://drkarenlee.ca/faces-behind-the-science-evelyn-peelen/ https://drkarenlee.ca/faces-behind-the-science-evelyn-peelen/#comments Mon, 14 May 2018 14:23:59 +0000 https://drkarenlee.ca/?p=1789 Research Profile- Evelyn Peelen

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Faces Behind the Science: Matthew Lincoln https://drkarenlee.ca/faces-behind-the-science-matthew-lincoln/ https://drkarenlee.ca/faces-behind-the-science-matthew-lincoln/#respond Fri, 11 May 2018 13:46:44 +0000 https://drkarenlee.ca/?p=1785 Research Profile- Matthew Lincoln

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