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)
Ontario Paediatric Inflammatory Bowel Disease dataset
Description: The Ontario Paediatric Inflammatory Bowel Disease Database (PIBD) includes all Ontario patients identified with Inflammatory Bowel Disease (Crohn's disease or Ulcerative Colitis), since 1991.
Access: ICES
Ontario Social Assistance Data (OSAD)
Description: The Ontario Social Assistance Database (OSAD) contains client-level administrative data that supports the administration of the two social assistance programs in Ontario—the Ontario Works program and the Ontario Disability Support Program.
Access: ICES, Statistics Canada
Ontario Student Drug Use and Health Survey (OSDUHS)
Description: The Ontario Student Drug Use and Health Survey (OSDUHS) is a population survey of Ontario students in grades 7 through 12. This self-administered, anonymous survey is conducted across the province every two years with the purpose of identifying epidemiological trends in student drug use, mental health, physical health, gambling, bullying, and other risk behaviours, as well as identifying risk and protective factors. Typically, the OSDUHS surveys thousands of students in over 200 elementary and secondary schools across Ontario. The survey sample is considered representative of all students in grades 7-12 in publicly funded schools in Ontario (almost one million students).
Access: CAMH
Oral Health Information Support System (OHISS)
Description: The OHISS supports program implementation, monitoring, evaluation and payment accountability for the oral components of the Ontario Public Health Standards: Requirements for Programs, Services, and Accountability (Standards) and the Healthy Smiles Ontario Program, as well as providing real time data access for program monitoring, reporting and accountability.
Access: MOH
Pediatric Heart Transplant Study (PHTS) database
Description: The Pediatric Heart Transplant Study (PHTS) is dedicated to the advancement of the science and treatment of children during listing for and following heart transplantation. The purposes of the group are to establish and maintain an international, prospective, event driven database for heart transplantation, to use the database to encourage and stimulate basic and clinical research in the field of pediatric heart transplantation and to promote new therapeutic strategies.
Access: Pediatric Heart Transplant Society
Pediatric Oncology Group of Ontario Network Information System (POGONIS)
Description: The Pediatric Oncology Group of Ontario Network Information System (POGONIS) captures information on childhood cancer cases in Ontario since 1985. POGONIS contains detailed clinical information on diagnosis, treatment, complications and long-term outcomes. There are five pediatric tertiary centres across Ontario. Each of them feeds data on the children they care for into POGONIS and are able to use POGONIS to track their own statistics regarding patients and service output. POGONIS is used to monitor: the incidence and prevalence of childhood cancer; the demand for cancer care; the nature and specifics of cancer treatment; patient outcomes; and long-term effects of childhood cancer and cancer treatment.
Access: ICES, POGO
Programme for International Student Assessment (PISA)
Description: PISA is the OECD's Programme for International Student Assessment. PISA measures 15-year-olds’ ability to use their reading, mathematics and science knowledge and skills to meet real-life challenges.
Access: OECD
Province of Ontario Neurodevelopmental Disorders (POND) Network
Description: The POND Network is a research network striving to understand the biology underpinning neurodevelopmental disorders to improve diagnosis, care and long-term outcomes for children. The POND Registry is a large clinical database of children and youth with Neurodevelopmental Disorders. Disorders studied in the POND Network include Autism Spectrum Disorder (ASD), Attention Deficit/Hyperactive Disorder (ADHD), Obsessive Compulsive Disorder (OCD), Tourette syndrome, Rett syndrome, Down Syndrome, Fragile X syndrome or any genetic differences associated with neurodevelopmental disorders.
Registered Persons Database (RPDB)
Description: This database contains information on persons registered under the Ontario Health Insurance Plan (OHIP) and who are eligible for the Ontario Drug Program. This database is critical to a number of key programs that deliver health services to the public, for example, access to hospital services, physician services and drug benefits.
Access: ICES, MOH
SCMH - Survey on COVID-19 and Mental Health
Description: The purpose of the Survey on COVID-19 and Mental Health is to collect data to assess the impacts of COVID-19 on the mental health and well-being of Canadians. Given that the pandemic has significantly altered our daily lives, it is necessary to gather information on its effects on mental health and coping skills. This voluntary survey includes topics on behaviours and symptoms associated with depression, anxiety and post-traumatic stress disorder (PTSD), suicide risk, pressure on parents, substance use, household violence, as well as general mental health.
Access: Statistics Canada