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The National Population Health Study of Neurological Conditions - Funded Projects

Funding for the National Population Health Study of Neurological Conditions is administered by the Public Health Agency of Canada.

The Public Health Agency of Canada directed a solicitation to Neurological Health Charities Canada in July 2009, to support the charities in coordinating the input of researchers and neurological disease stakeholders into the design of the study. The Agency then launched a solicitation in January 2010 and a second solicitation in November 2010, to invite research proposals from organizations and individuals with expertise in neurological health.

A total of $15 million has been awarded to carry out functions of the National Population Health Study of Neurological Conditions. Approximately $8 million of this investment has been allocated towards projects that will fill gaps in knowledge surrounding neurological conditions and their impacts on individuals, families, caregivers, and health care systems. A total of 14 contribution agreements have resulted from these solicitations.

A comprehensive report will be published in 2014, the final year of the study. The report will help provide the knowledge required by governments and health stakeholders to plan programs and health services for Canadians living with these conditions.

Descriptions of projects

Funding for the National Population Health Study of Neurological Conditions is supporting the following projects:

Study coordination, community engagement and dissemination

Research projects by primary area of focus

Scope:

Impacts:

Risk factors:

Health services:

Multiple focal points:

Study coordination, community engagement and dissemination

Canadian Neurological Diseases Population Study

Recipient: Neurological Health Charities Canada c/o Parkinson Society Canada
Funding: $1,628,076
Duration: 52 months (December 1, 2009 - March 31, 2014)

In brief: The purpose of the project is to engage the wider community of neurological stakeholders, coordinate the opportunities for input, disseminate the information and ultimately validate and endorse the findings and recommendations of the study.

Research projects

Neurological Conditions in British Columbia

Recipient: British Columbia Ministry of Health
Funding: $274,975
Duration: 31 months (November 1, 2010 - March 31, 2013)

In brief: This project involves using the B.C. province-wide chronic disease surveillance capacity to develop methods to include neurological conditions. The work will include:

  • developing and refining case definitions for the identified neurological conditions in health services administrative data.
  • sharing methods, tools and techniques with other provincial and territorial agencies to promote consistency with the Public Health Agency of Canada's Canadian Chronic Disease Surveillance System.

The project will contribute to more comprehensive Canadian data that can be used to improve health services over time.

Area of focus: Incidence, prevalence, co-morbidities, impact and health services

Understanding the Epidemiology of Neurological Conditions and Building the Methodological Foundation for Surveillance

Recipient: University of Calgary
Funding: $400,000
Duration: 28 months (November 1, 2010 - March 31, 2013)

In brief: A clear picture of how many people in Canada are affected by neurological disease is needed to enable effective prevention and health services. This project will:
  • review all existing data and data sources on identified neurological conditions.
  • compile an inventory of all existing clinical registries used to follow individuals with neurological disease in Canada and internationally.
  • recommend best data sources for surveillance of neurological conditions in Canada.

Area of focus: Incidence, prevalence, and co-morbidities (building capacity for a registry)

Validation of Administrative Data Algorithms to Determine Population Prevalence and Incidence of Alzheimer's Disease, Dementia, Multiple Sclerosis, Epilepsy and Parkinson's Disease

Recipient: Institute for Clinical Evaluative Sciences
Funding: $599,334
Duration: 28 months (November 16, 2010 - March 31, 2013)

In brief: Collecting accurate surveillance data about neurological conditions in Canada is dependent on having validated case definitions for these conditions. This project will support the development of those definitions by:
  • developing abstraction rules for the identification of patients with Alzheimer's disease, dementia, multiple sclerosis, epilepsy and Parkinson's disease from within electronic medical records of primary care physicians.
  • involving the collection of electronic medical records data from Ontario's Electronic Medical Record Administrative data Linked Database (EMRALD) and performing a chart abstraction of at least 2000 patients (including at least 50 known cases for each disease).
  • linking abstracted patients to provincial administrative data to determine best case definitions using administrative data and then using case definitions to determine provincial incidence and prevalence estimates; and developing methods that can later be applied in other provinces.

Area of focus: Incidence, prevalence, co-morbidities, impact and health services

Expansion of a Canadian Multi-Regional Population-Based Cerebral Palsy Registry

Recipient: Neurodevelopment Network, Inc. and the University of British Columbia
Funding: $393,738
Duration: 16 months (October 1, 2011 - March 31, 2013)

In brief: Cerebral palsy is a lifelong disorder with considerable attendant morbidity. This project will extend an existing cerebral palsy population-based registry into southern Alberta, British Columbia, Nova Scotia and Newfoundland, increasing the population coverage from 8 million to 15.5 million Canadians. This geographic extension will provide a greater capture of the socio-cultural diversity of Canada, including more rural regions and First Nations populations. The project will also acquire additional information on health service delivery to young children with cerebral palsy to identify any potential service gaps and regional disparities. These findings will allow the registry to provide insights into potential preventative and intervention strategies.

Area of focus: Incidence, prevalence, co-morbidities (building capacity for a registry) and health services

Neurological Registry Best Practice Guidelines and Implementation Toolkit

Recipient: University of Calgary
Funding: $199,511
Duration: 16 months (October 1, 2011 - March 31, 2013)

In brief: Having patient registries in Canada would improve the availability of information on the burden of neurological diseases in the country. This project will develop guidelines and a toolkit of best practices for use in the development and implementation of registries for neurological conditions in Canada. The project will not only enhance existing registry operations but also support the design and implementation of new registries.

Area of focus: Incidence, prevalence, co-morbidities (building capacity for a registry)

The Everyday Experience of Living with and Managing a Neurological Condition (LINC Study)

Recipient: Dalhousie University
Funding: $813,434
Duration:29 months (November 1, 2010 - March 31, 2013)

In brief: This study will assess the true impact of a neurological condition on the everyday life experiences of people living in Canada, including adults (17 or over) and parents of children (aged 5-16) with neurological conditions will be studied. The project will also describe the complex inter-dependence between children and adults with a neurological condition and their families. Information collected during the project on the resources (health, social and community resource utilization) and supports (family members, caregivers) will inform health and social reform initiatives.

Area of focus: Impact and health services

Understanding from Within: Developing Community-Driven and Culturally-Relevant Models for Understanding and Responding to Neurological Conditions Among Aboriginal Peoples

Recipient: Native Women's Association of Canada, University of Toronto and First Nations University
Funding: $785,278
Duration: 27 months (January 14, 2011 - March 31, 2013)

In brief: Very little is known about neurological conditions among Canadian Aboriginal groups. In particular, more information is required about Aboriginal women who generally have a longer life span than Aboriginal men and who experience disproportionate rates of ill-health including chronic disease (vs. non-Aboriginal women). Aboriginal women also represent the majority of caregivers in Aboriginal communities, whether they are formal or informal, paid or unpaid.  This project will:
  • examine how Aboriginal women view neurological conditions.
  • assess the impact of neurological conditions on Aboriginal women, their families and communities.
  • identify the resources and supports necessary to provide culturally appropriate care.

The results and information from the project will be shared to support policy making and knowledge exchange, as well as providing better resources for Aboriginal communities.

Area of focus: Impact, risk factors and health services

Systematic Review of Factors Influencing the Onset of Neurological Conditions

Recipient: University of Ottawa, McLaughlin Centre for Population Health Risk Assessment
Funding: $298,787
Duration: 29 months (November 1, 2010 - March 31, 2013)

In brief: Initiatives to help prevent neurological conditions depend on an understanding of the factors that increase a person's risk of developing these conditions.  This project involves a literature review to assess those risk factors (including those that are associated with biological, lifestyle, socioeconomic, environmental, and psychosocial factors).  The literature review will focus on risk factors associated with the development of identified neurological conditions as well as co-morbid conditions and how the disease is biologically/genetically initiated. The review will lead to prioritization of factors, as well as identification of gaps and areas for future research. In addition, a better understanding of the factors that are associated with worse disease outcomes will better inform initiatives for the prevention of complication or disease progression.

Area of focus: Risk factors

Systematic Review of Factors Influencing the Progression of Neurological Conditions

Recipient: University of Ottawa, McLaughlin Centre for Population Health Risk Assessment
Funding: $382,597
Duration: 29 months (November 1, 2010 - March 31, 2013)

In brief: Prognostic factors are those factors that are weighed when predicting the outcome of a disease or condition.  A better understanding of prognostic factors associated with neurological conditions will enable improvements to initiatives intended to prevent the conditions or their progression. This project involves a literature review to assess prognostic factors (biological, lifestyle, socioeconomic, environmental, psychosocial) associated with the progression of identified neurological conditions as well as co-morbid conditions and how the disease is biologically/genetically initiated. The review will lead to prioritization of factors, as well as identification of gaps and areas for future research. In addition, a better understanding of factors that are associated with worse disease outcomes will better inform initiatives for the prevention of complication or disease progression.

Area of focus: Risk factors

Use and Gaps in Health and Community-Based Services for Neurological Populations: A Systems Analysis

Recipient: University of Toronto
Funding: $471,242
Duration: 16 months (October 1, 2011 - March 31, 2013)

In brief: Stakeholders and governments rely on quality and accurate information to make decisions about program planning and service delivery. This project will support that evidence-based decision making by:
  • identifying health and community-based service needs and gaps for those affected by neurological conditions.
  • describing the availability, access, use, coordination and integration of health and community services as well as the perceived needs and gaps among service providers (across the continuum of care and across the lifespan by five geographic regions, urban and rural as well as community and institutional settings).
  • formulating key recommendations to help governments and stakeholders plan programs and health services.

Area of focus: Health services

Canadian Longitudinal Study on Aging: Neurological Conditions Initiative (CLSA-NCI)

Recipient: The Research Institute of the McGill University Health Centre
Funding: $651,440
Duration: 27 months (January 4, 2010 - March 31, 2013)

In brief: The Canadian population is aging. Because many neurological conditions are associated with aging, they will become an increasing burden on individuals, their families and society. Building upon a national study of aging (CLSA) that is recruiting 50,000 Canadians aged 45 - 85 years and following them for 20 years, this project focuses on collecting information on dementia, epilepsy, Parkinson's disease and brain injury in those who participate in the CLSA. In doing so, the project will provide information on the burden of these conditions in Canada including estimating the number of Canadians suffering from these conditions and examining risk factors. Information gathered from this project will inform decisions and activities around prevention, health care and social support for this population. In addition once in place the project will motivate ongoing research over the next 20 years on these important neurological conditions.

Area of focus: Incidence, prevalence, impact and risk factors

Canadian Primary Care Sentinel Surveillance Network: Neurological Conditions

Recipient: The College of Family Physicians of Canada
Funding: $306,359
Duration: 29 months (November 1, 2010 - March 31, 2013)

In brief: This project builds on an existing agreement between the Public Health Agency of Canada and the College of Family Physicians of Canada, called the Canadian Primary Care Sentinel Surveillance Network. By collecting information on Alzheimer's/dementia, Parkinson's disease, and epilepsy (conditions frequently seen in primary care), the project is designing, implementing and improving methods for data abstraction for these conditions from sentinel site electronic medical records. The project will increase understanding of the trends and management of the specific neurological conditions in the primary care setting. This understanding will enable better information to guide decisions about prevention and management of chronic disease in Canada.

Area of focus: Incidence, prevalence, co-morbidities, risk factors and health services

Innovations in Data, Evidence and Applications for Persons with Neurological Conditions (ideas PNC)

Recipient: University of Waterloo
Funding: $1,470,696
Duration: 31 months (November 1, 2010 - March 31, 2013)

In brief: Neurological conditions are known to be common in settings such as nursing homes, psychiatric facilities and in those who are receiving home care. However, the overall effect of the conditions in these people is not well understood. This project includes:

  • a literature review on caregiving and best practices for care planning for individuals with neurological conditions.
  • the use of Resident Assessment Information (RAI) tools to gather information about individuals with neurological conditions in these care settings in five provinces and territories.
  • identifying methods to improve both the quality of life for these individuals and the quality of services offered to them.

Area of focus: Prevalence, impact and health services

Neurological Conditions

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