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 Cystic Fibrosis Registry (CCFR)
Description: The CCFR contains detailed information on patients with a confirmed diagnosis of CF receiving clinical care at CF clinics across Canada. Important demographic and clinical information is collected, including birthdate, genotype, lung function, height, weight, hospitalizations, medications, bacterial infections, and more.
Access: ICES (*ON only), CCFR
Canadian Health Measures Survey (CHMS)
Description: The survey collects information on Canadians' health and health habits. Data are collected in two parts; (1) a household interview, which includes questions on many health-related topics; and (2) a visit to a mobile examination center to collect direct physical measures such as blood pressure, height and weight, bone density and vision tests.
Access: Statistics Canada
Canadian Health Survey on Children and Youth (CHSCY)
Description: The Canadian Health Survey on Children and Youth explores issues that have an impact on the physical and mental health of children and youth, such as physical activity, the use of electronic devices, time spent in school and extracurricular activities. Information from the survey is used to develop programs and policies to help improve the lives of Canadian children and youth.
Access: Statistics Canada
Canadian Hospitals Injury Reporting and Prevention Program (CHIRPP)
Description: The Canadian Hospitals Injury Reporting and Prevention Program (CHIRPP) is an injury and poisoning surveillance system that collects and analyzes data on injuries to people who are seen at the emergency rooms. CHIRPP is an emergency department-based injury surveillance system that uses data from 15 Canadian hospitals.
Access: Public Health Agency of Canada
Canadian Housing Survey (CHS)
Description: The Canadian Housing Survey (CHS) provides information on how Canadians feel about their housing and how housing affects them. Information is collected on core housing need; dwelling characteristics and housing tenure; perceptions of economic hardship from housing costs; dwelling and neighbourhood satisfaction; perceptions of neighbourhood issues and safety; housing moves including forced moves; community engagement; life and community satisfaction; self-assessed health; various dimensions of physical and mental well-being; experience with homelessness; socio-demographic characteristics; and the impacts of COVID-19 on some aspects of housing.
Access: Statistics Canada
Canadian Income Survey (CIS)
Description: The primary objective of the Canadian Income Survey (CIS) is to provide information on the income and income sources of Canadians, along with their individual and household characteristics.
Access: Statistics Canada
Canadian Index of Multiple Deprivation (CIMD) Dataset
Description: The CIMD allows for an understanding of inequalities through various measures of social well-being, including health, education and justice. While it is a geographically-based index of deprivation and marginalization, it can also be used as a proxy for an individual. Dimensions of deprivation included in the CIMD are: residential instability, economic dependency, ethno-cultural composition and situational vulnerability.
Access: Statistics Canada
Canadian Marginalization Index (CAN-MARG)
Description: The Canadian Marginalization Index (CAN-Marg) can be used to understand inequalities in health and other social problems related to health among either population groups or geographic areas across Canada. CAN-Marg is a data tool that combines a wide range of demographic indicators into four distinct dimensions of marginalization. As a multifaceted index, CAN-Marg measures multiple axes of deprivation in Canada, including residential instability, material deprivation, dependency and ethnic concentration.
Access: Statistics Canada
Canadian Neonatal Network (CNN)
Description: The Network maintains a standardized neonatal intensive care unit (NICU) database and provides a unique opportunity for researchers to participate in collaborative projects on a national and international scale. Health care professionals, health services researchers and health administrators participate actively in clinical, epidemiologic, outcomes, health services, health policy and informatics research aimed at improving efficacy and efficiency of neonatal care.
Access: Canadian Neonatal Network
Canadian Neuromuscular Disease Registry
Description: The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies. Currently, over 4500 neuromuscular patients have registered from across Canada.
Access: Canadian Neuromuscular Disease Registry