Canadian Cancer Registry (CCR)

Detailed information for 2002

Status:

Active

Frequency:

Annual

Record number:

3207

This is an administrative database that collects information on cancer incidence from all provincial and territorial cancer registries in Canada.

Data release - July 16, 2004

Description

In 1992, the person-oriented Canadian Cancer Registry (CCR) evolved from the event-oriented National Cancer Incidence Reporting System established in 1969. The CCR is an administrative database. Beginning with cases diagnosed in 1992, cancer incidence data collected by provincial and territorial cancer registries (PTCRs) have been reported to the CCR, which is maintained by Statistics Canada.

The CCR is a collaboration between the 13 Canadian PTCRs and the Health Statistics Division of Statistics Canada, where the data are maintained. Ultimate authority and responsibility for the completeness and the quality of the data reside with the provinces and territories. The data that comes into the CCR describes both the individual with the cancer, and the characteristics of the cancer.

The primary objective of the CCR is to provide a national database of information that can be used to produce standardized and comparable statistics for cancer incidence and survival data for each primary type of cancer. This information is used to assist and support health planners and decision-makers at all levels of government to: identify risk factors for cancer; plan, monitor and evaluate a broad range of cancer control programs (e.g., screening); and, conduct research in health services and economics.

The CCR is a dynamic database of all Canadian residents, alive or dead, who have been diagnosed with cancer since 1992. The CCR is a patient-based system that records the type and number (incidence) of primary cancers diagnosed for each person until death. Subsequent primary cancers occurring for patients who are already in the database are linked to their existing patient information. The advantage of this system is that longitudinal data is available for each cancer patient. The patient data is regularly linked to mortality data (death clearance) to optimize the accuracy of date, cause, and place of death fields in the CCR and to identify potential primary cancers not currently registered in the CCR. Since patients' records remain active on the CCR until confirmation of their death, survival rates for the various forms of cancer can be calculated.

In addition, the CCR regularly employs internal record linkage to identify and eliminate duplicate patient and tumour records. Conflicting information and other problems with the data uncovered by CCR processes are resolved through consultation with the reporting provinces and territories.

For more details, see "History of the Canadian Cancer Registry" in the Documentation section.

Reference period: Calendar year

Collection period: Fifteen months after the end of the reference period.

Subjects

  • Diseases and health conditions
  • Health
  • Health care services
  • Life expectancy and deaths

Data sources and methodology

Target population

The conceptual universe of the Canadian Cancer Registry database is persons whose usual place of residence is Canada or who are non-permanent residents. The residence at diagnosis is generally the place of usual residence, as stated by the patient or, as defined by the Census, "the dwelling in Canada where a person lives most of the time", regardless of where they are when diagnosed. For patients diagnosed with multiple primary tumours over time, the address may be different for each primary tumour.

The conceptual universe of the Canadian Cancer Registry is persons whose usual place of residence is Canada or who are non-permanent residents. The residence at the time of diagnosis is generally the place of usual residence, as stated by the diagnosed person or, as defined by the Census, "the dwelling in Canada where a person lives most of the time", regardless of where they are when diagnosed. For patients diagnosed with multiple primary tumours over time, the address may be different for each primary tumour.

Instrument design

This methodology does not apply.

Sampling

This survey is a census.

This methodology does not apply.

Data sources

Data are extracted from administrative files.

The Canadian Cancer Registry (CCR) is comprised of administrative data. Each provincial and territorial cancer registry supplies data on cancer patients and tumours in a standard, pre-edited format, on diskette or CD-ROM. Each year, approximately 145,000 new cancer tumour records are loaded on the Canadian Cancer Registry (CCR) patient-oriented database which is housed and maintained at Statistics Canada. Subsequent changes to registrations due to errors or omissions are also transmitted to Statistics Canada, as the information becomes available. Cancer records are loaded on the CCR database and those failing edits that ensure the validity of each data field and check the compatibility of different data elements within a record, are rejected and returned to the province or territory for verification or correction. Each provincial and territorial cancer registry has the ability to add, update, delete, and change the ownership (by province) of records. The CCR can be updated with new records or changes to previous records, as part of regular submissions from the registries to Statistics Canada. The following three software modules perform the tasks of building and maintaining the data in the CCR database: Core Edit, Internal Record Linkage, and Death Clearance. An internal record linkage and a national death clearance of cancer tumours diagnosed since 1992 are done annually. The Canadian Cancer Registry system employs technologies primarily based on SAS, TSO/ISPF, PL/1, and RAPID and runs on the Statistics Canada mainframe computer.

- All primary malignant tumours are reported to the CCR. The Canadian Council of Cancer Registries recommends that the following tumours should be reported to the CCR, although not all registries are able to submit:

- All primary, malignant tumours (ICD-O-2/3, topography codes C00.0-C80.9) with behaviour codes of 3 {except squamous cell skin cancer (ICD-O-2/3 morphology codes 805_-808_) and basal cell skin cancer (ICD-O-2/3 morphology codes 809_-811_)} with topographies C44.0-C44.9;

-In situ/intraepithelial/non-infiltrating/non-invasive carcinomas (all topographies in ICD-O-2/3 with behaviour codes of 2);

- Primary, benign tumours of the brain and central nervous system (topographies C70.0-C72.9 with ICD-O-2/3 behaviour codes of 0); and,

- Borderline malignancies (all topographies in ICD-O-2/3 with behaviour codes of 1).

The list of the Canadian Cancer Registry data elements on the Patient record and the Tumour record is provided in the document Cancer Statistics Input data dictionary (catalogue no. 84-601 XIE) accessible in the Documentation section below.

Error detection

Each cancer registry supplies information to the Canadian Cancer Registry (CCR) for each new patient and each new tumour in a standard, pre-edited format, on magnetic tape or diskette. Validity edits verify that fields contain valid entries and correlation edits verify that relationships between patient and tumour records make sense. Those failing edits are rejected and returned to the provincial and territorial cancer registries for verification or correction. The CCR can be updated with new records or changes to previous records, as part of regular submissions from registries to Statistics Canada. Data are edited by computer to ensure validity of each field and to check on the compatibility of different data elements within a record. An internal record linkage and a national death clearance of cancer tumours diagnosed since 1992 are done annually by Statistics Canada. Although the CCR is an administrative data application, the CCR edits ensure a consistency of editing across all provincial and territorial cancer registries.

Imputation

Although provincial and territorial cancer registries impute data in order to complete absent information, Statistics Canada does not.

Estimation

This methodology type does not apply to this statistical program.

Quality evaluation

Statistics Canada produces (at least twice per year) the Canadian Cancer Registry (CCR) Data Quality Reports that provide detailed feedback to the PTCRs on the quality of data submitted each year through the CCR Core Edit system. The Report presents data quality indicator percentages on all invasive tumour records reported in a given data year, including the number of breast tumours and the number of deaths reported in each data year and provides information on the percentage of missing values for all invasive tumours and for all patients, as well as the number of deaths that are reported for each year.

The CCR Data Quality Reports are used by the provincial and territorial cancer registries to monitor the quality of their information on the CCR database. Potential errors may be identified in situations where the information provided meets all edit requirements, but lacks in completeness or accuracy. Adherence to these guidelines help provincial and territorial cancer registries meet standards for acceptance in international publications such as Cancer Incidence in Five Continents, and Cancer Incidence in North America.

Before the availability of cancer statistics is announced in The Daily, the publication data files are reviewed and approved for official release by each provincial and territorial cancer registry.

Disclosure control

Statistics Canada is prohibited by law from releasing any data which would divulge information obtained under the Statistics Act that relates to any identifiable person, business or organization without the prior knowledge or the consent in writing of that person, business or organization. Various confidentiality rules are applied to all data that are released or published to prevent the publication or disclosure of any information deemed confidential. If necessary, data are suppressed to prevent direct or residual disclosure of identifiable data.

To increase the overall integrity of published cancer data, Statistics Canada developed the Merrigan-Hortop suppression program to suppress low cell counts in cancer data. It suppresses cells with a small count, and also suppresses any cell that could result in the disclosure of a previously suppressed cell by using the column or row total. The program suppresses low counts first within each province and territory. If any province or territory contains only one suppressed cell, then the program will suppress the next lowest count in that province or territory. It then does the same thing within each age group.

Revisions and seasonal adjustment

This methodology does not apply to this survey.

Data accuracy

Coverage

Since each Canadian province and territory has a Cancer Act and a legislated responsibility for cancer collection and control, reporting is virtually complete. All primary malignant tumours (except squamous cell skin cancer and basal cell skin cancer) are reported to the Canadian Cancer Registry (CCR). Each provincial and territorial cancer registry records all cases of cancer in its population by combining information from sources such as: cancer clinic files and radiotherapy reports; records from in-patient hospitals; out-patient clinics and private hospitals; pathology and other laboratory/autopsy reports; radiology and screening program reports; reports from physicians in private practice; and, reports on cancer deaths from Vital Statistics registrars. Periodically, some provincial and territorial cancer registries experience problems in submitting data to Statistics Canada on a timely basis.

To check for overcoverage, the CCR accepts tumour records only when the reporting provincial and territorial cancer registry is the same as the province or territory of residence of the cancer patient. Each provincial and territorial cancer registry is required to return records for residents of other jurisdictions to the appropriate provincial and territorial cancer registry. Undercoverage remains a stronger concern than overcoverage because of the following reasons: some provincial and territorial cancer registries do not use, or have had periods in the past where they have not used, death certificates as a source of cancer incidence; differing definitions of what is a cancer among the provincial and territorial cancer registries; differing definitions of what constitutes a malignant neoplasm; some cancers are difficult to diagnose because of their location (or site) in the body; differences among provincial and territorial cancer registries in coding practices, data entry or processing procedures; and, failure to report cancer cases treated in a province, territory, or country outside of the residence province or territory.

Designed studies are used by the provincial and territorial cancer registries to assess the completeness of case ascertainment (check for under and over-registration of cases). Re-abstraction is used to evaluate accuracy and completeness of reported items.

More details on response rates and other accuracy issues are provided in the additional documentation below.

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