Child Health Data Repository

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The datasets listed below align with the flourishing indicators in the Leong Centre's adapted Conceptual Framework for Childhood Well-Being in Canada. Navigate through the list in alphabetical order and expand (+) each one for more details or use the search function to choose the variables of interest.

Please note: this inventory does not provide access to the data. Information on how to access the specific data associated with the datasets will be included in the additional details of each, in general they can be access through the following:

The information and links below will be reviewed and updated on a regular basis. If you have additional datasets that you would like to see added to this inventory, please email leong.centre@sickkids.ca.

List of Datasets (A-Z)

More details about information included for each dataset in this repository (expand here +). 

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.

Assisted Devices Program (ADP)

Routinely Collected Health Data
Category
Routinely Collected Health Data
Population
Children & Adolescents
Jurisdiction
Ontario Only
Flourishing Outcomes
Access to Maternal & Child Health Services, Child Health & Morbidity
Related Content
ADP

Description: The Assistive Devices Program (ADP) provides support and funding to Ontario residents who have long-term physical disabilities, and access to personalized assistive devices appropriate for basic needs.

Access: ICES

Better Outcomes Registry & Network (BORN) Midwifery Legacy Database

Clinical Registry
Category
Clinical Registry
Population
Children & Adolescents, Perinatal
Jurisdiction
Ontario Only
Flourishing Outcomes
Access to Maternal & Child Health Services, Child Health & Morbidity, Parental Health & Morbidity
Related Content

Description: The BORN Midwifery Legacy Data include record level data on clinical, administrative and utilization of services is available for all midwifery courses of care invoiced as of April 2006 through March 2012. Note that it's not always possible to map certain legacy data elements and pick-list values to the new BIS data dictionary.

Access: BORN

Better Outcomes Registry & Network (BORN) Niday Legacy Database

Clinical Registry
Category
Clinical Registry
Population
Children & Adolescents, Perinatal
Jurisdiction
Ontario Only
Flourishing Outcomes
Access to Maternal & Child Health Services, Child Health & Morbidity, Parental Health & Morbidity
Related Content

Description: The BORN Niday Legacy Database includes perinatal data from approximately 89% of hospital births in Ontario in the 2006–2007 fiscal year to 100% of hospital births in the 2010–2011 and 2011–2012 fiscal years. Note that it's not always possible to map certain legacy data elements and pick-list values to the new BIS data dictionary.

Access: ICES, BORN

BORN Information System (BORN-BIS)

Clinical Registry
Category
Clinical Registry
Population
Children & Adolescents, Perinatal
Jurisdiction
Ontario Only
Flourishing Outcomes
Access to Maternal & Child Health Services, Child Health & Morbidity, Parental Health & Morbidity
Related Content

Description: The Better Outcomes Registry & Network (BORN) is Ontario's prescribed maternal, newborn and child registry with the role of facilitating quality care for families across the province. BORN collects, interprets, shares and rigorously protects high-quality data essential to making Ontario the safest place in the world to have a baby. The BORN dataset includes information on fertility data, prenatal screening, fetal anomalies, hospital admission data, and midwifery information.

Access: ICES, BORN

Canadian Census Health and Environment Cohorts (CanCHEC)

Routinely Collected Health Data, Survey Data
Category
Routinely Collected Health Data, Survey Data
Population
Children & Adolescents, Families, Perinatal
Jurisdiction
Pan-Canadian
Flourishing Outcomes
Access to Maternal & Child Health Services, Adolescent Suicide, Child Health & Morbidity, Educational Achievement, Life Satisfaction, Parental Health & Morbidity
Related Content

Description: The Canadian Census Health and Environment Cohorts (CanCHECs) are population-based probabilistically linked datasets. The CanCHECs combine long-form census respondents (or National Household Survey (NHS) respondents) with administrative health data (e.g. mortality, cancer, hospitalizations, ambulatory care) and annual mailing address postal codes. These data can be used to examine health outcomes by population characteristics measured by the long-form census or NHS (e.g. income, education, occupation, language, ethnicity, immigrant status, or Indigenous identity). Environmental data can be attached to the CanCHECs using the annual postal code file in order to examine the association between environmental exposure and a health outcome.

Access: Statistics Canada

Canadian Childhood Cancer Surveillance and Control Program (CCCSCP): Cancer in Young Canadians Surveillance Program (CYP-C/CCYC)

Clinical Registry
Category
Clinical Registry
Population
Children & Adolescents
Jurisdiction
Pan-Canadian
Flourishing Outcomes
Child Health & Morbidity
Related Content

Description: The Cancer in Young Canadians Surveillance Program component is a nationwide population-based surveillance program conducted in 17 pediatric oncology centres and selected provincial cancer registries across Canada. Information about diagnosis, treatment and outcomes is collected directly from medical charts at time of diagnosis and at six-month intervals up to five years from consenting patients aged younger than 20 years.

Access: PHAC

Canadian Chronic Disease Surveillance System (CCDSS)

Routinely Collected Health Data
Category
Routinely Collected Health Data
Population
Children & Adolescents, Perinatal
Jurisdiction
Pan-Canadian
Flourishing Outcomes
Access to Maternal & Child Health Services, Child Health & Morbidity, Parental Health & Morbidity
Related Content

Description: The Public Health Agency of Canada (PHAC) established the Canadian Chronic Disease Surveillance System (CCDSS) in 2009 to facilitate standardized, national estimates of chronic disease prevalence, incidence, and outcomes. The CCDSS primarily relies on linked health insurance registration files, physician billing claims, hospital discharge abstracts, and prescription drug claims data for case identification. CCDSS data can be used to report national estimates of incidence, prevalence, all-cause mortality, health care utilization, and multimorbidity and comorbidity.  

Access: PHAC

Canadian Community Health Survey (CCHS)

Survey Data
Category
Survey Data
Population
Children & Adolescents, Families, Perinatal
Jurisdiction
Pan-Canadian
Flourishing Outcomes
Access to Maternal & Child Health Services, Access to Maternal & Child Mental Health Services, Adolescent Suicide, Child Health & Morbidity, Growth & Nutrition, Lack of Poverty, Life Satisfaction, Overweight & Obesity, Parental Health & Morbidity
Related Content

Description: The CCHS is a cross-sectional survey that collects information related to health status, health care utilization and health determinants for the Canadian population.  The primary use of the CCHS is health surveillance and population health research, and to use information to monitor, plan, implement and evaluate programs to improve the health of Canadians. 

Access: ICES, Statistics Canada

Canadian Congenital Anomalies Surveillance System (CCASS)

Routinely Collected Health Data
Category
Routinely Collected Health Data
Population
Perinatal
Jurisdiction
Pan-Canadian
Flourishing Outcomes
Child Health & Morbidity
Related Content

Description: The Canadian Congenital Anomalies Surveillance System (CCASS) is an ongoing and passive population-based congenital anomalies surveillance system, established in 1966 as a result of the thalidomide tragedy. CCASS is administered by the Maternal and Infant Health Section of the Public Health Agency of Canada (PHAC).

Access: PHAC

Canadian Coroner and Medical Examiner Database (CCMED)

Routinely Collected Health Data
Category
Routinely Collected Health Data
Population
Children & Adolescents, Perinatal
Jurisdiction
Pan-Canadian
Flourishing Outcomes
Adolescent Suicide, Child Health & Morbidity, Parental Health & Morbidity

Description: The provincial and territorial Coroners and Medical Examiners (C/ME) hold data on deaths reported to the offices in their jurisdictions. The development of a Canadian Coroner and Medical Examiner Database is a collaborative effort of the 13 provincial and territorial (P/T) Chief C/MEs, Statistics Canada and the Public Health Agency of Canada. All deaths of Canadian residents and non-residents in Canada for which a coroner's or medical examiner's investigation was conducted.

Access: Statistics Canada