What is the Child Health Data Repository?
The Child Health Data Repository is a comprehensive inventory of over 100 Canadian datasets that can be used to search for specific intersections of child/family health and equity variables based on our Conceptual Framework for Child Flourishing in Canada. Through this tool, we strive to promote and facilitate access to existing datasets relevant to child health equity research.
To request a free consultation with our data consultant, Sima Gandhi, please complete the online registration form for our Data Consultation Service. For any other inquiries, or suggestions on how we can improve our Data Repostiry, please send an email to leong.centre@sickkids.ca.
What is Included in the Data Repository?
Description. Provides a summary of the scope of the dataset and what type of information is available.
Flourishing Indicators. Measures of child and family flourishing included in the Leong Centre's adapted Conceptual Framework for Child Flourishing in Canada. These include: Adolescent Suicide, Life Satisfaction, Access to Maternal & Child Mental Health Services, Protection from Violence, Early Child Development & School Readiness, Access to Maternal & Child Health Services, Child Health & Morbidity, Parental Health & Morbidity, Overweight & Obesity, Growth & Nutrition, Educational Achievement, Social Skills, Health Promoting Environment, Reproductive & Sexual Health, Lack of Poverty
Jurisdiction. Refers to the region from which the data is collected, and includes the following categories: Ontario Only, Pan-Canadian, International.
Category. Refers to the type of data categorized as follows:
- Survey Data. Survey data include data collected from a sample of respondents. Data are collected from a targeted audience about a specific topic to conduct research. Survey methods may be cross-sectional or longitudinal, and conducted through include online or paper or questionnaires, telephone surveys, or in-person interviews.
- Routinely Collected Health Data. Routinely collected health data included data collected during health system encounters, including physicians’ offices, diagnostic procedures, hospital admissions, among others. These data are collected to examine health system delivery or performance.
- Routinely Collected Social and Environmental Data. Data sources related to social services provided to families, such as housing, financial assistance, childcare, employment, as well as sources of area and community-level data such as resources, neighbourhood safety, and built environment, among others.
- Clinical Registry. Clinical disease or patient registries including records of individuals with specific conditions, diagnoses, procedures or interventions. Registries provide information on clinical practice, patient outcomes, safety and effectiveness, treatment outcomes and costs.
- Large Prospective Cohorts. Prospective cohorts include observational data on specific disease or clinical populations in real time, extracted from administrative data or electronic health record systems.
Population. The individuals and groups represented in each database, including:
- Perinatal (Maternal & Newborns). Includes data on maternal health (health status, health service use), fertility (treatment, procedures), prenatal (antenatal) care, hospital admissions (pregnancy, labour, birth) post-natal care, early newborn care and screening (age < 30 days), fetal and congenital anomalies, and neonatal outcomes.
- Children & Adolescents. Includes data related to health and social outcomes among children and adolescents aged 30 days to 19 years.
- Families. Data on family and household characteristics and outcomes (e.g. income, educational attainment, employment, family type/composition, social assistance, access to childcare).
Access. How the data can be accessed.
Link. External URL for more information on the dataset, including methodology, data definitions, variables, and related documentation.
How Can Data be Accessed?
This inventory does not provide data access. Information on how to access the specific data associated with the datasets can be found in the details of each, but in general can be accessed through the following:
- ICES data holdings: https://www.ices.on.ca/Data-and-Privacy/ICES-data/Working-with-ICES-Data
- Statistics Canada Microdata Access (information on accessing data using the Public Use Microdata File (PUMF) and Research Data Centres (RDCs): https://www.statcan.gc.ca/en/microdata
List of Datasets (A-Z)
Canadian Organ Replacement Register (CORR)
Description: The Canadian Organ Replacement Register (CORR) is a pan-Canadian information system managed by CIHI. CORR collects data from hospital dialysis programs, transplant programs, organ procurement organizations (OPOs) and independent health facilities to track patients from their first treatment for end-stage organ failure (dialysis or transplantation) to their death.
Access: ICES (*ON only), CIHI
Canadian Partnership for Tomorrow's Health (CanPath)
Description: The CanPath study provides comprehensive genomic, clinical, behavioural and environmental data on 330,000 Canadians for the global research community to produce evidence to establish health-related policies. CanPath has collected data from approximately 330,000 volunteer Canadians, including information about health, lifestyle, environment and behaviour. The size of the cohort and the richness of its epidemiological, clinical and biological data positions Canada amongst the world’s leaders in longitudinal cancer and chronic disease research.
Access: CanPath
Canadian Patient Experiences Reporting System (CPERS)
Description: The Canadian Patient Experiences Survey on Inpatient Care (CPES-IC) (PDF) is a standardized survey patients use to provide feedback about the quality of care they received during their most recent stay in a Canadian acute care hospital. Information is collected on patients from 3 hospital service lines: medical, surgical and maternity.
Access: CIHI
Canadian Pediatric Ischemic Stroke Registry (CPISR)
Description: The CPISR is a prospective, national population-based study, which includes patients across all 16 Canadian acute care children's hospitals. Children with arterial ischemic stroke were prospectively enrolled since January 1992, to capture documented disease incidence, presentations, risk factors, and treatments.
Canadian Pediatric Surgery Network (CAPSNet)
Description: The Canadian Pediatric Surgery Network (CAPSNet) is a multi-speciality Canadian collaborative established in 2005 to enable systematic study of the two most common structural birth defects encountered by pediatric general surgeons: gastroschisis (GS) and congenital diaphragmatic hernia (CDH).
Access: Canadian Pediatric Surgery Network
Canadian Primary Care Sentinel Surveillance Network (CPCSSN)
Description: The Canadian Primary Care Sentinel Surveillance Network (CPCSSN) engages with clinicians, researchers, and policy makers to better understand primary care efficiencies and gaps to improve health care for Canadians. CPCSSN brings together twelve primary care research networks under a common governance structure for the purposes of research, disease surveillance and quality improvement.
Canadian Survey on Disability (CSD)
Description: The CSD gathers information about Canadians aged 15 and over whose daily activities are limited due to a long-term condition or health-related problem. The survey collects information on: the type and severity of disability, use of aids and assistive devices, daily help received or required, use of various therapies and social service supports, educational attainment, labour force participation details, requirements and unmet needs for accommodations at school or work, the experience of being housebound, veterans of the Canadian Armed Forces with disabilities, Internet use, methods used to access government services and sources of income.
Access: Statistics Canada
Canadian Urban Environmental Health Research Consortium (CANUE)
Description: The CANUE datasets are a collection of data from the Canadian Urban Environmental (CANUE) Health Research Consortium. The data is broadly categorized as: 1). AIR QUALITY - includes measures of ground level ozone, fine particulates, sulfur dioxide, and nitrogen dioxide; 2). GREENNESS - includes several different measures using normalized difference vegetation indices (NDVI); 3). WEATHER AND CLIMATE - includes measures for local climate zones, water balance metrics, and weather indicators; and 4). NEIGHBOURHOOD - includes measures of material and social deprivation, access to employment, nighttime light, active living environments, and the Canadian Marginalization Index.
Access: CANUE
Cardiac Care Network (CCN)
Description: The Cardiac Care Network (CCN) of Ontario (CorHealth Ontario) is an advisory body dedicated to ensuring equitable, timely, and appropriate access to cardiac services in the province of Ontario. CCN engages in two main areas of activity: (1) Coordinating the provision of adult cardiac services province-wide with the aid of a computerized registry of all cardiac surgery patients. This database serves as a waiting list management system, which is used to facilitate and monitor access to cardiac surgery. Expansion of the registry to include other surgical and non-surgical care is under development; (2) Advising the Ontario Ministry of Health on matters related to adult cardiac services.
CCN includes all 18 hospitals in Ontario that perform adult cardiac catheterization and surgery and is funded by the Ministry of Health and Long-Term Care. A patient is added to the list when s/he is referred for cardiac surgery; and removed from the list at the time of surgery, death, or a decision not to pursue surgery.
Access: ICES
CARTR Plus-BORN Database
Description: BORN helps fertility clinics+B29:B30 in Canada collect, store, and use fertility treatment data through the Canadian Assisted Reproductive Technologies Register (CARTR Plus). CARTR joined forces with BORN Ontario as a means to link IVF treatment data with birth outcomes for children born through assisted reproductive technology (ART). One of the primary aims of the CARTR-BORN linkage is the ongoing monitoring of the health of children born as a result of ART. Another aim of the CARTR-BORN database is to collect information on the cumulative success rate of a single IVF cycle.
Access: BORN