Appendix 1: Mapping Connections: An understanding of neurological conditions in Canada
Appendix 1
Components of the National Population Health Study of Neurological Conditions
Each project and survey in this report may be mentioned by its reference number or short title. Table A-1 indicates which neurological conditions and focus areas were explored by each project and survey, while their main objectives are highlighted in the list that follows. Brief descriptions, materials, and publications from these projects and surveys are also available on the NHCC and Agency websites.
| Title: | Neurological Conditions in British Columbia |
|---|---|
| Short title: | BC Administrative Data Project |
| Project objectives: | (1) To provide population-level estimates of incidence, prevalence, comorbidity, mortality, health care service utilization, and health care costs for selected neurological conditions in British Columbia; (2) To perform an extensive review of the diagnostic codes used to identify neurological conditions over time, through the consideration of alternative case definitions and through the comparison of findings with other sources, including surveys and published data. |
| Title: | Expansion of the Canadian Chronic Disease Surveillance System for National Surveillance of Neurological Conditions |
|---|---|
| Short title: | CCDSS Expansion Project |
| Project objectives: | (1) Among the 15 neurological conditions assessed, to determine which conditions can be appropriately tracked at the national level using health administrative databases; (2) To develop case definitions for Alzheimer’s disease and other dementias, epilepsy, multiple sclerosis, parkinsonism, and stroke to track national prevalence and incidence, and eventually all-cause mortality, comorbidities, and use of health care services among Canadians living with these conditions. |
| Online resources: | Surveillance |
| Title: | Findings from the Canadian Community Health Survey (2010–2011) |
|---|---|
| Short title: | CCHS 2010–2011 Project |
| Project objectives: | (1) To provide community-based prevalence estimates for neurological conditions by age and sex; (2) To examine the prevalence of neurological conditions by selected sociodemographic variables. |
| Online resources: | Annual Component (CCHS) 2010 and 2011 Canadian Community Health Survey - Annual Component (CCHS) 2010 Canadian Community Health Survey - Annual Component (CCHS) 2011 Public Health Infobase Data Tools |
| Title: | Expansion of a Canadian Multi-Regional Population-Based Cerebral Palsy Registry |
|---|---|
| Short title: | Cerebral Palsy Registry Project |
| Project objectives: | (1) To extend the existing cerebral palsy registry to additional regions and provinces, specifically Southern Alberta, British Columbia, Nova Scotia, and Newfoundland and Labrador; (2) To identify risk factors associated with cerebral palsy; (3) To acquire additional information on health service delivery to young children with cerebral palsy in order to identify any potential service gaps and regional disparities. |
| Online resources: | The Canadian Cerebral Palsy Registry |
| Title: | Canadian Longitudinal Study on Aging: Neurological Conditions Initiative (CLSA–NCI) |
|---|---|
| Short title: | CLSA–NCI Project |
| Project objectives: | (1) To design a comprehensive assessment of four neurological conditions (Alzheimer’s disease and other dementias, brain injury, epilepsy, Parkinson's disease) within the CLSA to estimate the prevalence and incidence of these conditions; (2) To assess the impact of the four neurological conditions on health, the social care system and families using both individual level data and linkage with administrative databases; (3) To develop CLSA sub-studies to examine the risk and prognostic factors of the targeted neurological conditions and conduct a subset of these studies within the timeframe of the Study. |
| Online resources: | Canadian Longitudinal Study on Aging |
| Title: | Canadian Primary Care Sentinel Surveillance Network – Neurodegenerative Conditions |
|---|---|
| Short title: | EMR Project |
| Project objectives: | (1) To develop an efficient, effective, dynamic, valid, longitudinal chronic disease database that is relevant at local, regional, provincial and national levels, with particular reference to three neurological conditions (Alzheimer’s disease and other dementias, epilepsy, parkinsonism); (2) To study the epidemiology of Alzheimer’s disease and other dementias, epilepsy and parkinsonism in Canada; (3) To study the clinical care of people with Alzheimer’s disease and other dementias, epilepsy, and parkinsonism in primary care settings. |
| Online resources: | Canadian Primary Care Sentinel Surveillance Network |
| Title: | Use and Gaps in Health and Community-Based Services for Neurological Populations: A Systems Analysis |
|---|---|
| Short title: | Health Services Project |
| Project objectives: | (1) To identify health and community-based service needs and gaps and exemplary programs in the peer-reviewed and grey literature for individuals living with neurological conditions; (2) To explore from the perspective of service providers, the health and community-based service needs and gaps in the Canadian context taking into account different geographic regions (Atlantic Canada, Quebec, Ontario, Western Canada, Northern Canada), urban and rural, and community and institutional settings; (3) To describe the availability, access, use, coordination and integration of health and community services and perceived needs and gaps among service providers across the continuum of care and across the lifespan, by the variables listed above; (4) To identify opportunities and successes that can be leveraged across the regions and nationally to formulate key recommendations to help governments and stakeholders better plan programs and health services. |
| Title: | Innovations in Data, Evidence and Applications for Persons with Neurological Conditions (ideas PNC) |
|---|---|
| Short title: | interRAI Project |
| Project objectives: | (1) To estimate the prevalence of 10 neurological conditions across the continuum of care in at least four Canadian provinces; (2) To examine the costs of care associated with neurological conditions including both formal and informal sources; (3) To examine the experience of informal caregivers providing support, including the extent and type of care provided, to different populations with neurological conditions in different care settings; (4) To develop a detailed clinical profile of persons with at least one of the 10 targeted neurological conditions in different care settings; (5) To evaluate the applicability of current planning approaches used in various service settings to persons with neurological conditions and provide recommendations on how to improve care planning protocols to meet current best practices identified in the neurological literature; (6) To examine access to, and utilization of, health and social services by persons with neurological conditions to identify service gaps where the needs of this population may not be met; (7) To identify approaches for performance measurement for organizations serving persons with neurological conditions. |
| Online resources: | ideas PNC |
| Title: | The Everyday Experience of Living with and Managing a Neurological Condition (LINC) |
|---|---|
| Short title: | LINC Project |
| Project objectives: | (1) To describe the impact of neurological conditions on the everyday life experiences of individuals, families, caregivers and communities; (2) To examine the complex inter-dependence between adults with a neurological condition and their families; (3) To describe the ability of health, social and community services and agencies in supporting individuals and families to self-manage life with a neurological condition. |
| Online resources: | The LINC Study |
| Title: | National Population Health Study of Neurological Conditions Microsimulation Component: Health and Economic Modelling of Neurological Conditions |
|---|---|
| Short title: | Microsimulation Project |
| Project objectives: | (1) To build microsimulation models of seven groups of neurological conditions and injuries (Alzheimer’s disease and other dementias, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s disease/parkinsonism, hospitalized traumatic brain injury, hospitalized traumatic spinal cord injury), expanding on the Statistics Canada Population Health Model (POHEM) platform and to apply these models to project the future burden, both in terms of dollars and impact on health, of key neurological conditions over the next five, 10, 15, and 20 years under status quo assumptions. |
| Online resources: | Population health model |
| Title: | Understanding from Within: Developing Community-Driven and Culturally Relevant Models for Understanding and Responding to Neurological Conditions among Aboriginal People (Native Women’s Association of Canada) |
|---|---|
| Short title: | NWAC Project |
| Project objectives: | (1) To improve the understanding of how Aboriginal Canadians conceptualize neurological conditions and the impact on their families and communities; (2) To determine risk and protective factors for neurological conditions among the participants of this study; (3) To assess the needed resources and supports to provide culturally appropriate care. |
| Online resources: | Understanding from Within |
| Title: | Validation of Administrative Data Algorithms to Determine Population Prevalence and Incidence of Alzheimer's Disease and Other Dementias, Multiple Sclerosis, Epilepsy and Parkinson's Disease (Parkinsonism) |
|---|---|
| Short title: | ON Administrative Data Validation Project |
| Project objectives: | (1) To perform an administrative data validation using coding algorithms based on case ascertainment for epilepsy, multiple sclerosis, Alzheimer's disease and other dementias and Parkinson's disease.Footnote 53 Validated administrative data algorithms for each of these conditions will provide new opportunities to examine their prevalence and incidence among patients. |
| Online resources: | Electronic Medical Record Administrative Data Linked Database (EMRALD) |
| Title: | Systematic Review of Factors Influencing the Onset of Neurological Conditions |
|---|---|
| Short title: | Onset Risk Factors Project |
| Project objectives: | (1) To conduct a comprehensive, systematic literature review for the development of each of the priority neurological conditions with respect to a wide range of risk factors, including biological, lifestyle, socioeconomic, environmental, and psychosocial factors, and comorbidity (such as stroke or mental illness) and possible mechanisms of action; (2) To assess and summarize the available evidence on the determinants of neurological conditions, and describe the strengths and weaknesses of the current scientific literature. |
| Title: | Systematic Review of Factors Influencing the Progression of Neurological Conditions |
|---|---|
| Short title: | Progression Risk Factors Project |
| Project objectives: | (1) To conduct a comprehensive, systematic literature review for the progression of each of the priority neurological conditions with respect to a wide range of risk factors, including biological, lifestyle, socioeconomic, environmental, and psychosocial factors, and comorbidity (such as stroke or mental illness) and possible mechanisms of action; (2) To assess and summarize the available evidence on the determinants of neurological conditions, and describe the strengths and weaknesses of the current scientific literature. |
| Title: | Neurological Registry Best Practice Guidelines and Implementation Toolkit |
|---|---|
| Short title: | Registry Guidelines Project |
| Project objectives: | (1) To create comprehensive guidelines through consensus building for the development and implementation of registries of neurological conditions in Canada; (2) To create a toolkit for the development and implementation of neurological condition registries in Canada. |
| Online resources: | Canadian Registry Network |
| Title: | Survey on Living with Neurological Conditions in Canada (2011–2012) |
|---|---|
| Short title: | SLNCC 2011–2012 Project |
| Project objectives: | (1) To describe the characteristics of individuals with a neurological condition; (2) To describe the general physical and mental well-being of Canadians with a neurological condition; (3) To describe comorbid chronic conditions among Canadians living with a neurological condition; (4) To describe the impact of neurological conditions on quality of life. |
| Online resources: | Survey on Living with Neurological Conditions in Canada (SLNCC) |
| Title: | Survey of Neurological Conditions in Institutions in Canada (2011–2012) |
|---|---|
| Short title: | SNCIC 2011–2012 Project |
| Project objectives: | (1) To provide prevalence estimates of neurological conditions in long-term care facilities. |
| Online resources: | Survey of Neurological Conditions in Institutions in Canada (SNCIC) |
| Title: | Understanding the Epidemiology of Neurological Conditions and Building the Methodological Foundation for Surveillance |
|---|---|
| Short title: | Systematic Reviews Project |
| Project objectives: | (1) To perform systematic reviews of the incidence and prevalence of all priority neurological conditions identified by the Agency; (2) To summarize and make recommendations on the best ascertainment sources for surveillance for each of the neurological conditions of interest; (3) To develop an inventory of existing neurological registries in Canada and other developed countries. |
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