The Cancer in Young People in Canada program

Who are we?

The Cancer in Young People in Canada (CYP-C) program is a national, population-based surveillance system studying all children and youth with cancer in Canada. CYP-C collects information on children and youth with cancer including treatments, complications, and outcomes. For this population, CYP-C aims to help us to better understand risk factors, improve outcomes, enhance the quality and accessibility of care, and reduce late effects. CYP-C is fully funded and managed by the Public Health Agency of Canada in partnership with the C17 Council, the network of all the seventeen children’s cancer hospitals across the country.

What information do we collect?

The CYP-C program collects health and treatment information on each child/youth under the age of fifteen diagnosed with cancer in Canada. Data are collected from all the children's cancer hospitals in Canada. Designated staff at these hospitals send information without individuals' names by private, secured data channels to a national, electronic database where this information is stored for ongoing research and monitoring.

Detailed information on the types of information that is collected by the program.
Demographics Diagnostic Details Time to Treatment Treatment Other
Sex Date of diagnosis

Diagnosis

First health care
professional contacted
Treatment plan and
start date
Organ transplant
(type and date)
Date of birth ICDO-M, ICDO-T
and ICCC codes
Date first health care
professional contacted
Treatment completion
details
Complications
Age at diagnosis Stage at diagnosis

Risk

Dates first seen by:
oncologist, surgeon,
and/or specialist
Chemotherapy
and dose
(agent(s) and dose)
Hospitalizations
Province

Postal code

Grade

Chromosomal testing

Metastases and site(s)

 

Surgery details Relapse
Ethnicity Predisposing and genetic
conditions

 

Radiation (intent, type, site) Vital status

 

 

 

Hematopoietic stem cell transplantation Height and weight

How will the information we collect improve the lives of children and youth diagnosed with cancer?

Each year approximately 880 children and youth under the age of fifteen are diagnosed with cancer in Canada, and 150 die from their disease. CYP-C has been designed to provide information needed for supporting the reduction of the burden of cancer among children and youth, reducing complications and long-term health problems associated with cancer treatment, and improving treatment and care.

Next steps

CYP-C will be expanded in the future to include adolescents between the ages of 15 and 19.

Fact Sheets

Who do I contact to obtain more information about the program?

Please contact us by email at cypc-ccjc@phac-aspc.gc.ca.

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