Brain Canada convened five invitational stakeholder consultations in Vancouver, Calgary,
Toronto, Montreal and Halifax during the spring of 2013. These discussions were designed to
help inform the research program of the Canada Brain Research Fund. A Consultation
Planning Committee (page ii) supported the design and implementation of these meetings.
Participants expressed their appreciation for being consulted and spoke candidly about
their hopes and concerns for the Canada Brain Research Fund and the future of Brain
Canada. While the initial intent of the consultations was to focus on the fund, participants’
comments often expanded to include opinions and suggestions related to the larger
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The purpose was to bring together key stakeholders in neuroscience, as well as policy-decision-makers and elected officials, and to engage these participants in thoughtful dialogue on how best to create the public policy framework needed to support research into neurological and psychiatric diseases and their impact. Roundtable sessions have taken place in March in Ottawa, and in May in Calgary, Vancouver and Toronto.
The Public Policy Forum prepared a report of the discussions, highlighting the key messages that emerged, and recommendations about how the coalition would be most effective in disseminating our common messages to governments and the general public. The roundtable report was prepared with funding from the Max Bell Foundation.
Impact study on Neurological disease, disorders and injuries in Canada
The Impact Study was produced by the Canadian Neurological Sciences Federation (CNSF) and the Canadian Brain and Nerve Health Coalition (CBANHC) – of which NeuroScience Canada is a member – in collaboration with the Canadian Institute for Health Information (CIHI). The report measures the incidence, prevalence, economic and social impact of neurological diseases, disorders and injuries in Canada.
The report highlights 11 neurological conditions for which sufficient data was available, including: Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), brain tumours, cerebral palsy, epilepsy, head injury, headaches, multiple sclerosis, Parkinson’s disease, spinal injuries, stroke. The report also provides a short summary of the current literature on an additional 20 neurological conditions for which there is little or no data: anoxic encephalopathy, autism, attention Deficit Hyperactivity Disorder (ADHD), benign intracranial hypertension, Bell's Palsy, Complex Regional Pain Syndrome, Congenital Abnormalities of the Central Nervous System and Spine, Creutzfeldt-Jakob Disease, Degenerative Disorders of the Spine, Disorders of the Peripheral Nervous System Global Developmental Delay, Huntington's Disease, Hydrocephalus, Muscular Dystrophy Myasthenia Gravis, Sleep Disorders, Syringomyelia, Spinocerebellar Ataxias, Tourette Syndrome and Trimeminal Neuralgia.
CBANHC and NeuroScience Canada chose to embark in the study because neurological diseases, disorders and injuries suffer from a low profile in Canada and from a lack of cohesion among representative groups. Currently, there are no comprehensive statistics that accurately measure how many Canadians are affected by neurological disorders and what the costs of individual disorders are to the health care system.
The purpose of the report is to improve understanding of the epidemiology and the impact of selected neurological conditions on the Canadian health care system and society. The report provides an estimate of the direct and indirect costs, disability-adjusted life years and hospital utilization associated with these conditions, using available data sources. This work is intended to serve as a baseline for information about the burden of neurological conditions across the country and to provide a foundation for future research in this area. The report also provides important information to key stakeholders and decision-makers in Canada who are responsible for building a long-term national strategy for neurological sciences in the areas of clinical care and research.
The Case for Canada’s Increased Investment in Neuroscience Research
Over the past few years, NeuroScience Canada has taken on a leadership role to raise awareness about the incidence and impact of diseases, disorders and injuries of the brain, spinal cord and nervous system; how common mechanisms link these conditions; how excellent Canadian neuroscience research can reduce this burden; and the corresponding need for governments and private donors to increase funding for neuroscience research.
On March 15th, 2006, NeuroScience Canada released a document titled: The Case for Canada’s Increased Investment in Neuroscience Research (Case). The Case contains consolidated data from a variety of sources, including Health Canada, the World Health Organization, and the Canadian Institutes of Health Research. NeuroScience Canada received input on the Case from the Public Policy and Communications Committee Advisory Council, as well as other neuroscience stakeholder groups, such as the Canadian Association for Neuroscience (CAN), the Society for Neuroscience (SfN), the Canadian College of Neuropsychopharmacology, the Canadian Neurological Sciences Federation and the Canadian Brain and Nerve Health Coalition.
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