Analysis of Human Development, Child and Youth Health Data Using Existing Canadian Databases and Cohorts: Data Partner Linkage Tool
The aim of this Data Partner Linkage Tool is to help connect researchers with organizations and individuals who would like to provide access to existing datasets for research projects being submitted to the Analysis of Human Development, Child and Youth Health Data Using Existing Canadian Databases and Cohorts funding opportunity.
Data partners are invited to share information about their datasets and details of any process/selection criteria associated with accessing the data by competing the form below. The information provided will be shared publicly below and updated regularly.
The use of this tool is optional. Completing the form is voluntary, and applicants are not required to contact those who have chosen to make their information available through this linkage tool.
Researchers seeking access to datasets may also wish to reference the Leong Centre Child Health Data Repository, a comprehensive inventory of over 100 Canadian datasets that can be used to search for specific intersections of child/family health and equity variables.
Interested Data Partners
Notice
The information is provided in the language in which it was submitted by the respondent.
The table below shows information about Data Partners who are interested in forging partnerships in relation to access to data for the Data Analysis Using Existing Databases & Cohorts funding opportunity.
| Contact Details | Description of Data | Data Access Considerations |
|---|---|---|
| Maelstrom Research Rita Wissa Executive Director rwissa@maelstrom-research.org |
Maelstrom provides resources and services for data cataloguing and harmonization. While Maelstrom does not hold individual participant data, the team maintains a publicly available metadata catalogue documenting over 450 epidemiological studies (239 Canadian) across 29 networks, including many child or developmental studies. Researchers can discover information about research networks, studies, and variables, including objectives, study design and methods, data and sample availability, domains of information covered, and over 2 million variables collected from 265 studies. Maelstrom also develops tools and methods to support data harmonization and collaborates with national and international initiatives to develop and maintain data harmonization platforms facilitating secondary use of existing data. | Maelstrom does not hold any individual participant data but facilitates data discovery through the freely available study and variable catalogue. The team is happy to provide assistance with using the catalogue and other resources. Within partnerships with research initiatives, Maelstrom also provides expertise, methods, and tools to support data management, harmonization, and documentation activities. |
|
Ontario Birth Study Mr. Kashtin Bertoni Kashtin.Bertoni@sinaihealth.ca 416-596-4200 ext. 6036 |
The Ontario Birth Study (OBS) is an ongoing, longitudinal cohort study that recruits expectant mothers early in pregnancy and follows them until their child reaches 5 years of age. This data and biospecimen platform is embedded in the healthcare system in Mount Sinai Hospital, Toronto, ON since 2013 and has data and samples on over 4,500 pregnancies with 2,100 children (71% of eligible) engaged in follow-up. We use questionnaires throughout pregnancy, abstraction from clinical records and interviews with the mothers and children to collect detailed data for research into pregnancy complications, early childhood development (cognitive, motor, socio-emotional) and maternal health. There is opportunity for data linkage to other datasets including CANUE and hospital administrative records through their OHIP numbers. Find out more on our website and in our Cohort Profile | We welcome researchers to provide preliminary details on their project to see if it is feasible with OBS resources by completing our preliminary request form or by email (OntarioBirthStudy.MSH@sinaihealth.ca) at least 2 weeks prior to a submission deadline. At this point, letters of support and initial quotes can be provided. Use of OBS resources is subject to approval of the research by the OBS Steering Committee, obtaining ethical approval, payment of the cost-recovery fees and a completed Data Transfer Agreement. |
|
The Applied Research Group for Kids! (TARGet Kids!) Catherine Birken and Jonathon Maguire Lead Senior Investigators targetkids.study@sickkids.ca |
TARGet Kids! is a longitudinal, community practice-based research network and open cohort dataset. Its overall goal is to improve the health of Canadian children by optimizing growth and development through prevention and early-life interventions. Repeated parent-reported questionnaires are administered to collect data on child nutrition and health behaviours including screen time, physical activity, sleep, and health outcomes including early child development, mental health, and school and childcare participation. Direct anthropometric measures and blood pressure are collected by trained research staff at healthcare visits. Non-fasting blood samples are also collected to assess cardiometabolic markers, micronutrients, and inflammatory markers. TARGet Kids! data are linked to ICES health administrative databases using Ontario Health Insurance Plan numbers, as well as to Ontario provincial standardized assessment data from EQAO (Education Quality and Accountability Office) | Data access is available through an established collaborative review process. Investigators interested in using TARGet Kids! data should initiate contact by emailing targetkids.study@sickkids.ca. Following review by TARGet Kids! the Executive Committee, applicants will be invited to submit a brief research proposal outlining the project background, objectives, methods, timeline, and budget, and to complete a Data Analysis and Creation Plan (DCP). The DCP must be presented at a TARGet Kids! Science Meeting. Review and approval are conducted by designated DCP reviewers, including TARGet Kids! trainees and investigators, based on scientific merit, feasibility, and alignment with available resources. Upon approval, data access is authorized through formal agreements, including the Data Access MOU and Data Sharing and Analysis Guidelines, which define mutual obligations related to data governance, security, publication, and authorship. |
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Health Data Research Network Canada (HDRN Canada) Anne Hayes Director, Partnerships and Data Services anne.hayes@hdrn.ca |
Health Data Research Network Canada (HDRN Canada) Data Services facilitates access to multi-regional health and related data held by HDRN Canada data centre member organizations across 10 provinces, 2 territories, and 2 national organizations (the Canadian Institute for Health Information and Statistics Canada). HDRN Canada data centres hold population-based health and health-related data including: clinical and administrative care; population and public health surveillance; diagnostics and testing; social, education, justice and community determinants; pharmaceuticals and drug utilization; and health workforce and system registries. Through HDRN Canada, researchers can request access to almost 600 linkable data assets, including the Early Development Instrument (BC), TARGet Kids! cohort (ON), BabyFirst Screen (MB), Students diagnosed with ADHD (NB), among many others. |
All projects are supported by our team of data scientists, project managers, data access coordinators and analysts. We provide end-to-end support, helping you design your study, assess feasibility, navigate data access processes and complete your analysis. We work closely with all of our data centre members, leveraging compatible processes across the country to minimize administrative burden. Researchers submit a single data access request which is subject to each data centre’s approval requirements. Timelines vary depending on the number of data centres, the complexity of the request, and data custodian requirements. We also support requests to link researcher-collected data with administrative data, where appropriate approvals are in place. Research involving First Nations, Inuit and Métis data or communities will require appropriate partnerships, engagement, and governance consistent with Indigenous data sovereignty. |
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Canadian Urban Environmental Health Research Consortium (CANUE) CANUE data portal Dany Doiron, Managing Director 514-623-3269 dany.doiron@canue.ca |
CANUE generates, collates, and documents health-relevant standardized urban environmental data for all postal codes in Canada and maintains a working data platform that disseminate these datasets. CANUE holds and distributes >40 individual datasets and more than 300 unique variables in four broad domains: neighbourhood factors, greenness, air quality, and weather and climate. These datasets are provided free of charge to Canadian researchers. | Because of an agreement with the private company that produces the postal codes to which CANUE datasets are indexed, only individuals with Canadian academic affiliations can access CANUE data and use of CANUE datasets is restricted to academic, research, or educational purposes. Individuals applying to access CANUE data need to confirm their academic credentials via a data sharing and use agreement. This agreement also ensures that proper citations and acknowledgements are included in any published work that makes use of CANUE data and provides a means for CANUE to track the usage of datasets. Data requests are made via the CANUE data portal. |
| CRDCN – Canadian Research Data Centre Network Grant Gibson, Assistant Director Research & Evaluation grant.gibson@crdcn.ca |
The CRDCN is a platform providing access to Statistics Canada survey data and administrative data. We have over 80 datasets in the subject of Health. The data have national coverage, but surveys are restricted to off-reserve, non institutional populations (and generally limited to the 10 provinces). Administrative records that might be most relevant to researchers interested in this funding opportunity are: Canadian Cancer Registry, National Ambulatory Care Reporting System, Discharge Abstracts Database, Vital Statistics (Births, Stillbirths & Deaths). Other special-interest health datasets include the Canadian Census Health & Environment Cohort, National Population Health Survey (with some administrative linkages), and Survey of Mental Health & Stressful Events. Browse our available databases | The application process can be found at Accessing RDC Data. An application requires a research proposal, the template for which is available at the above link. Researchers should be aware that a background check is required, and the expected time from proposal *submission* to approval being provided is generally 6 weeks. This can fluctuate when proposal volumes are higher and a good proposal can take some time to properly draft. Research proposals are expected to be the result of researcher-driven inquiry rather than work conducted on behalf of private companies or government agencies. Researchers who are not themselves tenured faculty, or under the supervision of tenured faculty should also be aware that a peer review from a tenured faculty member in their field of research is required (generally adjunct faculty or assistant professors). Access must be in person at one of the secure facilities. |
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CHILD Cohort Study Dr. Michelle Helm helmm1@mcmaster.ca 4164542565 |
The CHILD Cohort Study is a multi-center longitudinal, prospective, general population cohort study following infants until adulthood. Women with singleton pregnancies were recruited from Vancouver, Edmonton, Manitoba, and Toronto in 2008 (n=3454). The study specific aims are to identify the environmental, genetic causes and underlying mechanisms of asthma and allergies as primary outcomes, as well as the examination of several secondary health outcomes, including growth, body composition and obesity, cardiovascular and respiratory health, infections and immunity, neurodevelopment, and mental health. Infants were studied at birth, at a home visit at 3-4 months, and at clinic visits at ages 1, 3, 5 and 8 years and currently assessing age 12/13. Study retention since birth had a retention rate of 93% (n=3,224). Attendance to study visits was 87.4% at 1-year, 85% at 3-years, 81% at 5 years and 86.4% at 8 years. The 13-year visit was launched in Summer 2022 (n=2970). | To access CHILD Cohort Study data and /or biological samples for a collaborative project, an investigator must submit a Concept Proposal on our webpage. Each proposal will undergo a preliminary review, which can take up to 4 weeks. We do require a signed Data and Sample Transfer Agreement, proof of ethics approval and payment of a data access fee. Any submissions for letters of support for grant proposals must be submitted at least 2 weeks in advance of the grant deadline. |
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