CCDPC Major Programs

The Canadian Childhood Cancer Surveillance and Control Program (CCCSCP)

About the CCCSCP

History

The Canadian Childhood Cancer Surveillance and Control Program (CCCSCP) was created in January 1992 with funding provided through the federal government's Brighter Futures Initiative. A management committee, consisting of childhood cancer experts was established to oversee the Program and in 1993, a national consensus conference established its parameters.

The Program has been operating at a national level since 1995 through the Centre for Chronic Disease Prevention and Control (formerly the Cancer Bureau) at Health Canada, and working in collaboration with various partners: pediatric oncology centres, provincial cancer registries and other organizations involved with childhood cancer.

How the Program Works

The CCCSCP was designed to work as a nationally integrated surveillance system with four main components: Etiology, Tissue Bank, Treatment and Outcome Surveillance, Late Effects Study. Along with information on incidence and mortality, basic demographic data from provincial cancer registries and information from clinical trials databanks, each component fulfills a part of the complete cancer continuum.

The CCCSCP and the Childhood Cancer Continuum

The Public Health Agency of Canada provides qualified research personnel to collate and analyze all data received from the various partners involved in the Program. It also provides for information dissemination in the form of presentations at key conferences, research papers, reports, monographs and pamphlets.

A Management Committee oversees the Program and is comprised of representatives from pediatric oncology centres across Canada, provincial cancer registries and Health Canada. The Management Committee is responsible for decisions relating to data access, confidentiality, priorities and the overall strategic direction of the Program.

Working groups provide leadership and help steer each of the three existing Program components. Working group members are involved in the planning of activities, monitoring their progress, analysis of results and reporting of findings for each component.

Components

Here is a description of each component in the order each fits into the cancer continuum.

Etiology

This component examines possible risk factors in the development of childhood cancers. Detailed information on possible risk factors such as genetic factors, existing exposures and human behaviours is collected from childhood cancer patients and matched controls (persons who have not had a cancer experience).

Data have been collected for five years from patients in Quebec diagnosed with acute lymphocytic leukemia and brain tumours between 1994 and 1999 and on an equal number of age- and sex-matched controls. As well, information about parental pre-natal and childhood exposures was collected by telephone interviews, including demographic information and medical history, among other details.

Final analysis of the data (450 cases) has begun and a report is forthcoming.

Tissue Bank

The purpose of this component was to look at molecular and genetic links to childhood cancer through collecting and retaining normal and tumour tissue samples from newly diagnosed children (including blood samples from parents) registered with the Treatment and Outcome Surveillance component of the Program.

This component, though originally envisioned as part of the Program, did not progress past the pilot stage.

Treatment and Outcome Surveillance (TOS)

This component is a nationwide population-based surveillance program conducted in 17 pediatric oncology centres and selected provincial cancer registries across Canada. Information about diagnosis, treatment and outcomes is collected directly from medical charts at time of diagnosis and at six-month intervals up to five years from consenting patients aged younger than 20 years.

The main objective of this component is to look at patterns of health care service use among childhood cancer patients in Canada, to determine the proportion of childhood cancer patients receiving state-of-the-art treatment, and to monitor and assess clinical outcomes of childhood cancer patients. This component was also designed to be a study base for future studies.

Analysis of the first five years worth of data for children from birth to age 19 has recently been compiled by the Public Health Agency of Canada into two reports entitled Diagnosis and Initial Treatment of Cancer in Canadian Children 0 to 14 Years, 1995-2000 and Diagnosis and Initial Treatment of Cancer in Canadian Adolescents 15 to 19 Years, 1995-2000. The report looks at childhood cancer incidence rates as well as statistics on patterns of care and treatments and outcomes. Specifically, it looks at areas such as number of cases by age, most common cancers by age group, time between consecutive events leading to diagnosis (eg. time between first health care contact and assessment by a pediatric oncologist or surgeon), health care professional most often contacted, extent of disease, and registration of patients on clinical trials and treatment protocols.

Late Effects Study

This component is a study of childhood cancer survivors who were diagnosed between 1981 and 1990 in 1 of 12 pediatric oncology centres in Canada. The study has a two goals: to assess the long-term psychosocial and physical effects of cancer and its treatment on children and young adults who survive at least five years post-diagnosis, and to develop a risk profile of late effects in order to potentially minimize future impacts on future generations of survivors.

Data collection and processing is now complete and the Public Health Agency of Canada is now presenting results of the study at conferences and in publications.