The Multiple Sclerosis Society of Canada and the Multiple Sclerosis Scientific Research Foundation (MSSRF) have announced the awarding of a $3.2 million grant in support of the Canadian Pediatric Demyelinating Disease Network. Canada has the highest rate of multiple sclerosis (MS) in the world, and is one of the most common neurological diseases affecting Canadian young adults.
Established in 2004, the Network has grown to become one of the world’s largest and most comprehensive pediatric multiple sclerosis research organizations, providing researchers with a unique resource to act as a clearing house and forum for important insights about the cause and progression of MS — a chronic, often disabling disease of the central nervous system comprising the brain, spinal cord and optic nerve. Most people with MS are diagnosed between the ages of 15 and 40, and the unpredictable effects of MS last for the rest of their lives. The MS Society provides services to people with MS and their families and funds research to find the cause and cure for this disease.
The Network says funding from the new grant will allow it to build on the findings of existing studies to help uncover the progressive burden of pediatric multiple sclerosis from childhood through young adulthood. They note further that these discoveries will also help researchers better understand the burden experienced by adults with MS, and aid in early identification of risk factors and imaging cues that are suggestive of the disease’s onset, toward improving treatment outcomes and potentially preventing MS.
“This funding will allow us to study the impact of MS and of other demyelinating conditions on quality of life, learning and academic success, physical activity and overall health and exercise in affected children and adolescents. We will also evaluate the impact of MS on brain growth and variances in the immune system,” says Dr. Brenda Banwell, a renowned Canadian MS neurologist, chief of neurology at The Children’s Hospital of Philadelphia, adjunct scientist at The Hospital for Sick Children (SickKids) in Toronto, Senior Associate Scientist, Neurosciences & Mental Health Staff Neurologist, Neurology and Associate Professor, Pediatrics (Neurology) at the SickKids Research Institute in Toronto, and lead principal investigator of the study. Banwell believes that the new funding will fuel research that will provide a window into the earliest aspects of the disease and help researchers ask unique questions that cannot be asked in adult-onset MS.
Most institutions within the Network will take on new objectives as part of the “Progressive degeneration from onset in pediatric multiple sclerosis: Evaluation of clinical and health-related quality of life, early loss of brain integrity and accelerated immunological senescence” study. Under the leadership of Dr. Banwell, these objectives will focus on quality of life of children and adolescents living with MS, the impact of the disease on their transition to young adulthood, the impact of the disease on parents and caregivers, the impact of MS on brain development and cognitive performance, and the impact of MS on immune cells.
“Specifically, our interest is in understanding what factors determine MS outcome in children with a first attack of the immune system of the brain or spine,” Dr. Banwell notes on her SickKids Website.
“At the first level, we look at what clinical findings at the time of a first attack distinguish those children who go on to develop MS from those who don’t have any further attacks. We look at factors like age, sex, severity of the initial attack, whether they are critically ill or mildly affected at that first episode and how fast they recover. Then we look at what we call etiologic determinants — what the child might have been born with or experienced in their early childhood that might have led them to experience that first event and specifically whether those that develop MS have different risk factors than the children who don’t.
“Genetically we look at genes that are important in how our immune system behaves. We then look at the immune cells themselves in partnership with my main laboratory collaborators in Montreal. Our interest is in understanding how the immune cells of children at the time of the initial illness behave, and to see whether abnormal immune cell behavior persists over time in children subsequently diagnosed with MS. We also do very detailed MRI studies of the brain and we use these studies to look at inflammation- the hallmark of acute demyelination; as well as new inflammation and neurodegeneration — the findings that characterize MS.”
Dr. Banwell went on to note that “We are very interested in understanding why some children with an initial demyelinating attack do not develop MS. Does the ability to recover from the initial attack play an important role? Understanding the children who don’t develop MS, despite having had that first attack, may hold very valuable clues as to what we should be doing to help other children.
“We have been encouraged to present our work at national and international conferences where I represent SickKids and my field. I’ve recently been appointed as the Research Chair of the International Pediatric MS Study Group , which has representatives from 40 different countries.”
The study’s co-investigators include Dr. Ann Yeh (SickKids), Dr. Amit Bar-Or (Montreal Neurological Institute, McGill University), Dr. Doug Arnold (Montreal Neurological Institute, McGill University), and Dr. Ruth Ann Marrie (University of Manitoba).
“This research team has significantly changed the way the MS community understands and manages MS in children and youth, says Dr. Karen Lee, vice president, research at the MS Society of Canada. “It is encouraging to see that they are taking their research to the next level to better understand the progressive burden of pediatric MS and probe into the psychosocial, cognitive, and immunological impacts of the disease. This work will tell us a lot about adults with MS as well, in particular the early triggers and subclinical events that may be missed.”
Dr. Lee notes that collaborative research fosters sharing of knowledge, exchange of practices, opportunities for training and mentorship, while the birth of new knowledge and collaboration across disciplines, geographic regions and scientific expertise moves research forward and enables investigators to achieve goals that would otherwise be difficult when working in isolation.
“Until recently, pediatric MS was poorly understood,” Dr. Lee continues. “It wasn’t until the creation of the Canadian Pediatric Demyelinating Disease Network (or ‘the Network’ as I refer to it) that the topic of pediatric MS gained significant attention among the scientific and medical communities.”
The Canadian Pediatric Demyelinating Disease Network includes all 17 pediatric health care institutions in Canada, 6 additional Canadian sites in locations distant from a formal pediatric hospital as well as the more recent addition of the Children’s Hospital of Philadelphia in the U.S.
Dr. Lee says that over the past decade, the Network collected vital data from over 430 children and adolescents who were affected by demyelination, observed from the very first signs of illness and monitored over time, uncovering an enormous wealth of research to date about the features of MS in children, risk factors that help to predict those at high-risk for developing MS, and potential treatment options. The extensive clinical, cognitive, personal, biological, and imaging data collected enabled the Network to identify MS risk factors, grasp the underlying disease mechanism, and evaluate the mental and societal impacts of a disease that many believed only occurred in adults. The Network discovered that pediatric MS also affects memory and learning, and that pediatric MS patients experience. The research team will focus on:
– Understanding the impact of pediatric MS on physical and mental wellbeing, cognitive impairment, depression, anxiety and decreased physical activity, etc., and on the use of health services by patients and their parents
– Assessing MRI patterns, and examining the relationship between what is observed on MRI and how the patient is doing overall
– Determining irregularities in immune cells in pediatric patients and identifying whether low vitamin D or infection with Epstein-Barr Virus influences these irregularities
More information about the grant and the work of the Canadian Pediatric Demyelinating Disease Network can be found at: http://mssociety.ca
MS Society of Canada
The Multiple Sclerosis Scientific Research Foundation
The Hospital for Sick Children (SickKids)
The SickKids Research Institute
The SickKids Research Institute
Dr. Karen Lee