Cancer in Young People in Canada Data Tool

The Cancer in Young People in Canada (CYP-C) Data Tool provides pan-Canadian surveillance data on children and youth with cancer to inform research and planning for cancer control efforts.

  • Last updated: 2024-02-28

Technical Notes for

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Data Sources

The Incidence graphs and tables were created using data from both the Cancer in Young People in Canada program (CYP-C) and the Canadian Cancer Registry (CCR) database.

Cancer in Young People in Canada (CYP-C)

The CYP-C program collects health and treatment information on each child/youth under the age of 19 diagnosed with cancer and presenting at 1 of the 17 pediatric oncology centres in Canada. Only cases under the age of 15 years old with a diagnosis listed in the International Classification of Childhood Cancer, 3rd Edition (ICCC-3) between 2001 and 2020 are included. Each case registered in CYP-C is followed up to five years from the date of diagnosis.

There are two broad methods of data collection:

  • In Ontario, the Pediatric Oncology Group of Ontario (POGO) has maintained a population-based registry of incident cancer cases since 1985, diagnosed or treated in one of the five pediatric oncology centres in the province. POGO shares this information with the Public Health Agency of Canada through a data sharing agreement.
  • In all other Canadian jurisdictions, data are abstracted directly from patient medical charts by clinical research associates and entered into a secure electronic data entry and management tool (known as eCYP). Data are then collated at the Public Health Agency of Canada in Ottawa, Ontario.

Research ethics boards at the Public Health Agency of Canada and all pediatric oncology centres outside of Ontario participating in direct data collection have permitted CYP-C to collect detailed data on every eligible child, creating a truly population-based surveillance system.

Data was extracted from CYP-C on May 2, 2023, and from POGONIS on June 20, 2022.

Canadian Cancer Registry (CCR)

The Canadian Cancer Registry (CCR) is a population-based registry that includes incidence data collected and annually reported to Statistics Canada by each provincial/territorial cancer registry. The CCR collects information about each new primary cancer diagnosed among Canadian residents since 1992.

Data was extracted from the CCR Tabulation Master File released on August 23, 2022, and shared with the Public Health Agency of Canada (PHAC) in January 2023.

Extracted CCR data includes only incident primary childhood cancer cases diagnosed between 2001 and 2019.

Population data

Population estimates for Canada and the provinces/territories were provided by Statistics Canada’s Table 17-10-0005-01 Population estimates on July 1st, by age and sex, from the Annual Demographic Estimates. Crude and age-adjusted rates are calculated using the most current population data from Statistics Canada.

Data validation and completeness

Comparisons of incidence cases in CYP-C to the CCR data show that very few childhood cancer cases (aged 0 to 14 years) are treated outside of pediatric oncology centres.Footnote 1

Case reports from CYP-C may differ from those reported in the CCR for several reasons, including:

  • CCR excludes non-malignant cases.
  • Cancer incidence data from Quebec is not available from CCR.
  • CCR captures children who are diagnosed and treated outside of Canada’s 17 pediatric oncology centres.
  • CCR uses additional sources to identify cases including from outpatient clinics, private hospitals/practices, radiology and screening program reports, medical billing and hospital discharge administrative databases, and reports on cancer deaths from vital statistics registries.
  • Completeness of malignant and non-malignant cases can vary across CYP-C reporting sites and over time.

Methodology

Overview

Children and youth (under 15 years old) diagnosed with cancer, between 2001 and 2020, are included in the incidence data tool.

Selections

  • Sex: The sex of the child or youth.
  • Age: The age group of the child or youth at the time of their diagnosis: <1 year, 1 to 4 years, 5 to 9 years, 10 to 14 years, and All ages (<15 years).
  • Geography: The home region of the child or youth at the time of their cancer diagnosis: Prairies (Manitoba, Saskatchewan, and Alberta); Atlantic (Nova Scotia, New Brunswick, Prince Edward Island, and Newfoundland and Labrador); Territories (Yukon, Northwest Territories, and Nunavut); and the provinces of British Columbia, Quebec, and Ontario.
  • Dataset: The data source used to calculate the measure: Cancer in Young People in Canada and the Canadian Cancer Registry (excluding Quebec).
  • Period: The year of a child or youth’s cancer diagnosis.
  • Cancer: The cancer diagnosis of the child or youth. See Childhood cancer classification below for more information.

Measures

  • Number of new cases (incidence counts): The number of children and youth with a new diagnosis of cancer during a specific period in the population.
  • Crude incidence rate: The number of children and youth with a new diagnosis of cancer divided by the total number of children and youth in the population. Rates are presented per 1,000,000. Crude rates do not adjust for the age distribution of the population.
  • Age-standardized incidence rate: A weighted average of age-specific crude incidence rates using a standard population. Age-standardized incidence rates adjust for the age distribution of the population. This adjustment allows for comparisons across years and geographic region. Rates are presented per 1,000,000 and standardized to the age distribution of the 2011 Canadian standard population.
  • 5-year rolling average rates: The average rate over the previous 5 years. For example, the rolling average rate for the year 2005 is the average rate of 2001 to 2005. Rolling averages provide trends over time with minimum fluctuation.

Childhood cancer classification

Cancer and tumour types were defined using the International Classification of Childhood Cancer (ICCC). The ICCC is a diagnostic classification system for childhood cancer based on tumour morphology and primary site, with a greater emphasis on morphology as compared to the classification of cancers for adults.

The ICCC is coded using ICD-O-3, based on the definitions presented in Steliarova-Foucher et al. (2017), known as ICCC, Third Edition based on ICD-O-3/IARC 2017.Footnote 2

Multiple primaries were defined according to the International Agency for Research on Cancer’s (IARC) rules.

Suppression

To ensure confidentiality, case counts between 1 and 4 are suppressed. Rates based on case counts between 1 and 4 are not reported.

In addition, case counts are randomly rounded either up or down to a multiple of 5. Note, if the rounded count is zero, this means the actual number of cancer cases is zero. Crude rates are based on randomly rounded counts, while age-standardized rates are calculated using actual case counts.

References

Footnotes

Footnote 1

Mitra, D., Hutchings, K., Shaw, A., Barber, R., Sung, L., Bernstein, M., ... & Strahlendorf, C. (2015). The Cancer in Young People in Canada surveillance system. Health Promotion and Chronic Disease Prevention in Canada: Research, Policy and Practice, 35(4), 73.

Return to footnote 1 referrer

Footnote 2

Steliarova-Foucher E, Colombet M, Ries LAG, Rous B, Stiller CA. Classification of tumours. In: Steliarova-Foucher E, Colombet M, Ries LAG, Moreno F, Dolya A, Shin HY, Hesseling P, Stiller CA. International Incidence of Childhood Cancer, Volume III. Lyon: International Agency for Research on Cancer, 2017.

Return to footnote 2 referrer

Acknowledgments

The contributions of study participants, participating pediatric oncology centres, members of the CYP-C Management and Steering Committees, the Pediatric Oncology Group of Ontario and its five hospital partners, the C17 Council, and the Canadian Partnership Against Cancer are gratefully acknowledged.

Suggested Citation

Centre for Surveillance and Applied Research, Public Health Agency of Canada. Cancer in Young People in Canada Data Tool. 2024 Edition. Health Infobase. Ottawa (ON): Public Health Agency of Canada, 2024.

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