Overview – National Population Health Study of Neurological Conditions

About the Study

The $15 million, four-year (2009-2013) National Population Health Study of Neurological Conditions (the Study) represents Canada’s first-ever population health study of neurological conditions.

The study, led by the Public Health Agency of Canada and Neurological Health Charities Canada, in collaboration with Health Canada and the Canadian Institutes of Health Research, was comprised of 13 research projects, three national surveys, seven microsimulation models and the addition of four neurological conditions (epilepsy, multiple sclerosis, parkinsonism, Alzheimer’s disease and other dementias) to the Public Health Agency of Canada’s Canadian Chronic Disease Surveillance System.

The Study was developed in partnership between the Government of Canada and Neurological Health Charities Canada (NHCC), a coalition of 24 health charities representing the voice of individuals and families impacted by brain conditions. Approximately 177,000 Canadians with brain conditions and their caregivers offered insight and personal experience into key areas of the Study. The study also successfully engaged 130 researchers from 30 academic and non-academic institutions across Canada.

The Study was designed to address the lack of information about brain conditions in Canada.  Findings are intended to inform Canadians and governing bodies about the impact these conditions have on affected individuals, families and the health care system, and inform future program and policy development.

The Study marks an unprecedented level of collaboration across fields, professions, jurisdictions, conditions, and interests.  It provides information on brain conditions within a Canadian context, including the finding that brain  conditions, regardless of the specific diagnosis, present similar challenges for individuals, families, health care systems and the Canadian economy.  Findings will help Canadians realize the scale, scope and financial burden of brain conditions in Canada.

NHCC response to Mapping Connections

NHCC enthusiastically greeted the release in September 2014 of the Study report Mapping Connections: An Understanding Neurological Conditions in Canada. NHCC member organizations gathered in Ottawa at Canada-France Global Dementia Legacy Event for the official release of the report and the conclusion of the National Population Health Study of Neurological Conditions.

NHCC news release September 11, 2014

Below, please see statements from the NHCC chair, the Minister of Health and NHCC member organizations.

Joyce Gordon

Statement from Joyce Gordon, Chair, NHCC

Mapping Connections represents an extensive collaborative effort to gather new information about neurological conditions in Canada. Through Neurological Health Charities Canada’s partnership with the Government of Canada, the voice and lived experience of Canadians impacted by neurological conditions shaped the study. We look forward to using the study findings to help improve the lives of all Canadians affected by neurological conditions.”

Statement from The Honourable Rona Ambrose, Minister of Health

“The National Population Health Study of Neurological Conditions is the most comprehensive study of neurological conditions ever to be conducted in Canada. This research has given us a clearer picture of neurological conditions and their impacts. This is an important base of information needed by governments, health charities, healthcare providers and communities to ultimately help improve the lives of individuals living with their conditions, their families and caregivers.”

Minister of Health Rona Ambrose (centre) and NHCC Chair Joyce Gordon (holding report) officially release the report with representatives of NHCC organizations and government partners.

Comments from NHCC member organizations

“As a member of Neurological Health Charities Canada, the Alzheimer Society welcomes these new findings and applauds the federal government for their ongoing commitment to address the challenges of neurological conditions.  This report sheds more light on the widespread impact of such conditions, which include Alzheimer`s and dementia.  More importantly, these numbers will guide our efforts in research and help us provide better support and services for Canadians and their families impacted by these diseases. The Alzheimer Society looks forward to working with its NHCC partners and governments to put these numbers into action.” – Mimi Lowi-Young, CEO, Alzheimer Society Canada

“As a member of NHCC, the Heart and Stroke Foundation is looking forward to building on the results of the report to better combat neurological conditions, especially dementia and other vascular disorders. This report will ultimately help Canadians and health care providers by advancing our understand of the broad range of neurological disorders and how they are connected.” – Bobbe Wood, President, Heart and Stroke Foundation

“The Canadian Epilepsy Alliance, a member of Neurological Health Charities Canada, is delighted by the release of Mapping Connections in which epilepsy was one of the priority conditions.  This study will help provide greater understanding of the impacts that living with a neurological condition can have on people and families, identify where more research is needed and foster continuing partnerships, with the ultimate goal of improving the quality of life for Canadians affected by a neurological condition.” – Gail Dempsey, President, Canadian Epilepsy Alliance

“The Dystonia Medical Research Foundation is proud to have been a collaborative partner in Canada’s first ever population health study of neurological conditions.  We applaud the efforts of the thousands of volunteers across Canada who engaged in the study.” – Diane Gillespie, past Executive Director, Dystonia Medical Research Foundation Canada

“This Study brought funding to research to enhance outcomes for persons with neurological conditions.  The collective impact achieved through the partnerships and networks built through the study will be best advanced and achieve the greatest value from the Government of Canada’s investment by taking the critical next step – collective action.” – Dr. Richard J. Riopelle, Chair, Advocacy, Canadian Neurological Sciences Federation