Health Research Data: Initiatives
To advance data-intensive research, CIHR has made strategic investments in Initiatives with data-related objectives. A sampling of these data-related investments is outlined below.
Data platform Initiatives
Canadian Longitudinal Study on Aging (CLSA)
The CLSA is a national, long-term study of more than 50,000 Canadian males and females who were between the ages of 45-85 when recruited. The CLSA designed three open source software applications to protect participant confidentiality, ensure data harmonization, and facilitate collaboration among biobanks and researchers. The CLSA has completed the first wave of data collection, and data are available for use by researchers.
Canadian Research Data Centre Network (CRDCN)
The CRDCN is a network of secure computer laboratories located on 27 university campuses across Canada. Through the CRDCN, researchers with approved projects and security clearance have access to confidential and detailed social, economic and health-related microdata that are collected and administered by Statistics Canada.
SPOR Support for People and Patient-Oriented Research and Trials Units (SUPPORT Units)
SUPPORT Units are locally accessible, multidisciplinary clusters of research and policy resources. A key objective of the SUPPORT Units is to provide timely access to data. All are working on providing access to linked data and data-related support for patient-oriented research and many are conducting other data-related activities focused on improving data quality, producing data documentation, identifying new data sources, or developing data sharing agreements with partner organizations. In addition, some SUPPORT Units are offering training programs on the secondary analysis of existing large datasets for patient-oriented research, data management and biostatistics.
SPOR Canadian Data Platform
The CDP’s main objective is to provide a single stop for researchers to request access to rich health and social data from various sources across the country. The CDP offers the Data Access Support Hub (DASH), a single form for requesting multi-jurisdictional data.
Data-intensive research Initiatives
Canadian Consortium on Neurodegeneration in Aging (CCNA)
The CCNA is intended to promote and strengthen interdisciplinary collaboration in the field of neurodegenerative diseases affecting cognition in aging. The CCNA is collecting cohort data within Canada, and it is also leveraging complementary platforms in an effort to share this big data and expertise nationally and internationally. For example, through the CCNA, CIHR launched a competition to support Big Data in Dementia.
Canadian Epigenetics, Environment and Health Research Consortium (CEEHRC)
The CEEHRC is driving Canadian research on the role of DNA and environmental interactions in human health and disease. By positioning Canada as a leader within the International Human Epigenome Consortium (IHEC), CEEHRC is furthering the harmonization of data collection methods, and facilitating access and sharing of big data internationally.
Drug Safety and Effectiveness Network (DSEN)
Established in collaboration with Health Canada and other stakeholders, DSEN is designed to provide Canadian evidence on the topic of drug safety and effectiveness to regulators, policy-makers, health researchers, health professionals and patients. Through DSEN, the Canadian Network for Observational Drug Effect Studies (CNODES) uses a distributed model to access local protocol data and then meta-analysis of this big data is conducted centrally.
Environments and Health Initiative (EHI)
The EHI is supporting research on etiology, environmental measures, data platforms and intersectional prevention. A key component of this Initiative is focused on data platform enhancements and measurement. The EHI will further the use of Canada's existing longitudinal cohort studies, health administrative databases, monitoring and surveillance systems, and policy repositories.
Healthy Life Trajectories Initiative (HeLTI)
HeLTI will generate evidence to inform policy-makers on the prevention of non-communicable diseases. Through HeLTI, CIHR is supporting the development of a registry of Canadian cohorts focused on the Developmental Origins of Health and Disease (DOHaD) approach, which in turn will foster the use of associated data and biological samples. CIHR will also be funding HeLTI Linked International Intervention Cohorts to support joint teams in sharing, linking and analyzing international cohort data.
Pan-Canadian SPOR Network in Primary and Integrated Health Care Innovations (PIHCI)
PIHCI's main objective is to enable informed decision-making and transformation within the health care system to improve clinical, population health, health equity, and health systems outcomes. To facilitate cross-jurisdictional collaboration, a dynamic cohort has been built that includes 32 in-house datasets.
Personalized Medicine Initiative
This Initiative aims to enhance Canadian health outcomes by integrating evidence-based medicine and precision diagnostics into clinical practice. The Initiative is improving data harmonization within and among provinces, and supporting the development of interactive 'eHealth' applications.
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