Canadian Cancer Registry (CCR)

Detailed information for 2015

Status:

Active

Frequency:

Annual

Record number:

3207

The Canadian Cancer Registry (CCR) is a population based registry that includes data collected and reported to Statistics Canada (StatCan) by each provincial/territorial cancer registry (PTCR). The person based CCR collects information about each new primary cancer diagnosed among Canadian residents since 1992. The objective is to produce standardized and comparable incidence data that can be used to assist and support health planners and decision-makers to: identify risk factors; plan, monitor and evaluate cancer screening, treatment and control programs; and conduct research.

Data release - January 29, 2018

Description

Beginning with cases diagnosed in 1992, cancer incidence data collected by the provincial and territorial cancer registries (PTCRs) have been reported to Statistics Canada (StatCan) to populate the Canadian Cancer Registry (CCR).

The CCR falls under the governance of the Canadian Council of Cancer Registries (CCCR), a collaboration between the 13 Canadian PTCRs and the Health Statistics Division of StatCan. Ultimate authority and responsibility for the completeness and the quality of the data resides with the provinces and territories while StatCan is the custodian of the CCR.

The CCR is a dynamic database of all primary cancer cases diagnosed among Canadian residents since 1992. The data submitted by the PTCRs to StatCan describe both the individual with the cancer, and the characteristics of the cancer. Being a person-based system, the CCR contains information about the type and number of primary cancers diagnosed for each person. A person-oriented database has the advantage of being able to provide longitudinal data for each cancer patient such that a single person record exists for all tumors diagnosed during that person's lifetime.

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 (CCR) 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 type does not apply to this statistical program.

Sampling

The CCR is a census of persons diagnosed with cancer whose usual place of residence is Canada (whether they are permanent or non-permanent residents).

Data sources

The CCR is comprised of administrative data which are collected under section 13 of the Statistics Act. Each provincial and territorial cancer registry (PTCR) supplies data to Statistics Canada (StatCan) on cancer patients and tumours diagnosed within their jurisdiction. Each year new primary tumour records are added to the CCR. Since the CCR is dynamic, updates to previously submitted records are also submitted annually to StatCan.

The Canadian Council of Cancer Registries (CCCR) has set the standard on what data elements should be reported to the CCR as follows:

- All primary, malignant tumours (topographies C00.0-C80.9 and behaviour codes of 3);

- All carcinoma in situ/intraepithelial/noninfiltrating/noninvasive tumours (behaviour codes of 2); except cervix (topographies C53.0-C53.9) and prostate (topography C61.9);

- All borderline malignancies (behaviour codes of 1);

- Primary, benign tumours of the meninges, brain, spinal cord, cranial nerves and other parts of the central nervous system (topographies C70.0-C72.9 with behaviour codes of 0);

- Primary, benign tumours of the pituitary gland, craniopharyngeal duct and pineal gland (topographies C75.1, C75.2, C75.3 with behaviour codes of 0, for 2007 and later);

- EXCEPT certain non-melanoma skin cancers (topographies C44.0-C44.9 with behaviour codes of 1, 2, 3).

For details on the CCR scope, inclusions and exclusions, please contact Client Services at 613-951-1746 (statcan.hd-ds.statcan@canada.ca), Health Statistics Division.

The CCR includes basic patient demographic information (e.g., age and sex) and more detailed tumour information. For example, tumour records contain information about the characteristics of the tumour and its diagnosis. The list of data elements included on the CCR is provided in the CCR documentation, available upon request (613-951-1746 or statcan.hd-ds.statcan@canada.ca).

Error detection

Each record submitted by a PTCR is verified in order to identify possible errors (e.g., unexpected values or formatting issues). Validation edits are used to verify that each field contains values that fall within the allowable range for that data element. Correlation edits are used to check the compatibility of different data elements within a record and to verify that relationships between person and tumour information are logical. Match edits are used to check key identifier fields to aid in ensuring that, where identifiable, duplicate records are not added to the CCR database. These verifications are done as data are loaded into the CCR database and any records failing one or more edits are rejected and returned to the submitting PTCR for verification and/or correction.

The CCR also performs internal record linkage to identify possible duplicate records. Conflicting information and data issues uncovered during this process are resolved through consultation with the reporting PTCR. This process, for the 2015 diagnosis year, included records diagnosed up to December 31st, 2015 for all provinces and territories except Quebec. The de-duplication process was last completed for Quebec for all cases diagnosed up to December 31, 2008.

Imputation

StatCan does not impute missing data on the CCR.

Estimation

This methodology type does not apply to this statistical program.

Quality evaluation

StatCan produces Data Quality and Data Validation Reports that provide detailed feedback to the PTCRs on the quality of data submitted.

CCR Data Quality and Data Validation Reports are used by PTCRs to monitor the quality of their information in the CCR and meet standards for acceptance in international publications such as Cancer Incidence in Five Continents and Cancer Incidence in North America.

Disclosure control

StatCan is prohibited by law from releasing any information it collects which could identify any person, business, or organization, unless consent has been given by the respondent or as permitted by the Statistics Act. Various confidentiality rules are applied to all data prior to release or publication, such as suppression of confidential variables in microdata and suppression, random rounding or controlled rounding of tabular data.

In regards to random rounding of tabular data, the CCR rounds each cell count, independently of other cells, to a lower or higher multiple of 5; true zeros and actual counts evenly divisible by 5 are not affected. Random rounding is applied to each cell count independently. Specifically, an unbiased random rounding procedure is applied such that numbers ending in 0 or 5 are not rounded; numbers ending in a 1 or 6 are rounded up with a probability of 0.20 and down with a probability of 0.80; numbers ending in 2 or 7 are rounded up and down with probabilities of 0.40 and 0.60, respectively; numbers ending in 3 or 8 are rounded up and down with probabilities of 0.60 and 0.40, respectively; and, numbers ending in 4 or 9 are rounded up and down with probabilities of 0.80 and 0.20, respectively. Consequently, columns and rows will sum to totals only by chance. By design, differences between the rounded and actual counts will never exceed 4 and actual counts are more likely to be rounded to the nearest multiple of 5.

When calculating crude or specific rates and confidence intervals, the CCR uses the rounded count. Otherwise, the actual count can be deciphered relatively easily by using publicly available population estimates. Because age-standardized rates are more complex to calculate, involving the combining of data across multiple age strata, the CCR uses the actual age-specific counts to calculate the age-standardized rate and confidence intervals. However, the overall count of events contributing to the age-standardized rate is rounded when presented. For the special circumstance where the rounded overall count of events contributing to the age-standardized rate is zero, the actual age-standardized rate and corresponding confidence intervals are suppressed to maintain the ambiguity of zeros.

Revisions and seasonal adjustment

This methodology type does not apply to this statistical program.

Data accuracy

Completeness

Since each Canadian province and territory has a legislated responsibility for cancer collection and control, case ascertainment of malignant tumours is considered relatively good. Each provincial and territorial cancer registry (PTCR) identifies tumours in its population by combining information from sources such as: cancer clinic files, radiotherapy and haematology reports; records from in-patient hospital stays, out-patient clinics, and private hospitals; pathology and other laboratory/autopsy reports; radiology and screening program reports; reports from physicians in private practice; medical billing and hospital discharge administrative databases; and, reports on cancer deaths from Vital Statistics registrars. Some PTCRs experience problems in submitting data to Statistics Canada (StatCan) on a timely basis or updating the Canadian Cancer Registry (CCR) to reflect the current content of their registry. Cancer incidence data for Quebec is not available for diagnosis years after 2010.

As the CCR is a dynamic database, annual data collection includes new records for the current submission year as well as updates or new records from previously collected data years. As a result, the incidence for any given diagnosis year may change from one release to the next. In particular, delays in the reporting of new cases to StatCan typically results in undercounts of cases which are more pronounced in the most recently reported diagnosis year. Generally, the reporting delay ranges between 2% and 3% nationally. The missing cases are added to their appropriate diagnosis year, regardless of the year in which they are reported to the CCR.

In October 2014, Ontario implemented a new cancer reporting system, the Ontario Cancer Registry. The new system has several enhancements that permit the identification of cancer cases that previously went unrecorded. These include the use of more liberal rules for counting multiple primary sites, the use of additional source records and the inclusion of records that were previously not included. The implementation of this new system affects data from the 2010 diagnosis year onward.


Duplicates

To avoid duplication, the CCR accepts records only when the reporting PTCR is the same as the province or territory of residence of the person at the time of tumour diagnosis. Each PTCR is required to return records for residents of other jurisdictions to the appropriate PTCR for submission.

Under-reporting

Under-coverage of cancer tumours may exist for a variety of reasons: some PTCRs do not use, or have had periods in the past where they have not used, death certificates as a source of identifying cancer tumours; differing definitions among the PTCRs of what constitutes a reportable or malignant tumour; difficulty in diagnosing certain tumours because of their location (or site) in the body; differences among the PTCRs in coding practices, data entry or processing procedures; failure to report tumours diagnosed and treated in a province, territory or country outside of the province or territory of residence; and, delays in reporting of new cases to StatCan.

For the years 1992-2009 Ontario did not report in situ bladder cancers to the CCR; did not register non-melanoma skin cancers; and, had underestimated cases of Kaposi's sarcoma.

Because Quebec relies primarily on hospital data (i.e., hospitalizations or day surgeries) to identify cancers diagnosed until the end of 2010, the number of cases of some cancers, particularly prostate and skin melanoma are underestimated (source: Brisson J, Major D, Pelletier E. Evaluation of the completeness of the Fichier des tumeurs du Québec. Institut national de la santé publique du Québec; 2003).

Death certificate only cases

Cancer incidence may be under-reported for a few Canadian provinces due to missing information on death certificate only (DCO) cases. A DCO case occurs when cancer is discovered through the cause of death information on a death certificate, as opposed to through a cancer report from the medical system. Ontario has no DCO cases reported in 2014 and 2015 (around 1400 cases were reported in 2013); Quebec has no DCO cases reported for 2010 (around 1370 cases reported in 2009); Manitoba has not reported DCO cases since 2013 (43 cases were reported in 2012); and Newfoundland and Labrador did not report DCO cases until 2006.

Rules for reporting multiple primary cancers

For determining multiple primaries with tumours diagnosed as of January 1, 2007 onward, the CCR adopted the Multiple Primary and Histology Coding Rules from the Surveillance Epidemiology and End Results (SEER) program of the National Cancer Institute (NCI) in the United States. Not all registries were able to report according to the new requirements beginning in 2007. For the purpose of comparability between provinces and territories, the annual release of cancer incidence are disseminated from StatCan using the IARC rules* for determining multiple primary tumours.

*The International Agency for Research on Cancer (IARC) rules for determining multiple primary cancers (source: International Agency for Research on Cancer, International Association of Cancer Registries, and European Network of Cancer Registries. International Rules for Multiple Primary Cancers, (ICD-O Third Edition), Internal Report No.2004/02. Lyon, IARC, 2004).

Documentation

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