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. The CYP-C surveillance system operates through a collaboration between the Public Health Agency of Canada, the Canadian Partnership Against Cancer, and the C17 Council, a network of all seventeen children’s cancer hospitals across the country.
Technical Notes for
- All the graphs and tables were created using data from either the Cancer in Young People in Canada program (CYP-C) which includes the data from the Pediatric Oncology Group of Ontario (POGO) for Ontario and the eCYP system for all other Canadian jurisdictions, or the Canadian Cancer Registry (CCR) database at Statistics Canada.
Case reports from CYP-C may differ from those reported in the CCR for a number of reasons:
- CCR excludes non-malignant cases and cases in Quebec.
- 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 out-patient 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
- Only incident primary childhood cancer cases diagnosed between 2001 and 2019 for CYP-C and between 2001 and 2017 for CCR among Canadian children under 15 years of age were included, based on data extracted from eCYP on 2020-10-21, from POGONIS on 2020-08-19, and from the CCR released on January 29th, 2020 Tabulation Master File and shared with the Public Health Agency of Canada (PHAC).
Cancer Site Coding
- Types of cancer/tumour were defined using the International Classification of Childhood Cancer (ICCC) based on ICD-O-3/WHO 2008. Multiple primaries were defined according to the International Agency for Resarch on Cancer’s (IARC) rules.
- Morphology or behaviour codes for Langerhans cell histiocytosis (LCH) and chronic myeloproliferative disease were updated to:
- Recode all LCH (M=9751,9752,9753, b=1,2,3) cases to malignant primary site (/3)
- Recode Myeloproliferative neoplasms (9975/1) to Chronic myeloproliferative diseases (9960/3)
- Changed the ICCC classification for Post-transplant Lymphoproliferative Disorders (PTLD) (9971/3) from leukemia ICCC 015 I(e) to lymphoma ICCC 022 II(b.4)
- Population estimates for Canada and the provinces/territories, as denominators for calculation of incidence rates, were based on Statistics Canada’s Annual Demographic Estimates: Canada, Provinces and Territories, 2020. The file shared with PHAC includes single year of age.
- Age-standardized incidence rates (ASIRs) were calculated using the direct method with the 2011 Canadian standard population to allow for comparisons across years and geographic region.
- The regions at the time of diagnosis included 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, Ontario and Quebec.
- To ensure confidentiality, case counts are randomly rounded either up or down to a multiple of 5. Case counts between 1 and 4 are suppressed. If the rounded count is zero, this means the actual number of cancer cases is zero. Crude rates are based on randomly rounded counts and are not presented when there are fewer than 5 cases. ASIRs are based on actual case counts.
- In the figures/tables which present the rolling average rates, the 5-year periods 2001–2005, 2002–2006, …, 2015–2019 are shown as year 2005, 2006, 2007, …, 2019, respectively.
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.
Centre for Surveillance and Applied Research, Public Health Agency of Canada. Cancer in Young People in Canada Data Tool. 2020 Edition. Public Health Infobase. Ottawa (ON): Public Health Agency of Canada, 2020.
Learn more about CYP-C
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