Canadian Cancer Registry (CCR) (Canada) | B.R.I.D.G.E. TO DATA®, DGI, LLC

Summary

Coordinating Country

Canada

Region

13 Canadian provinces and territories

Brief Database Description

The Canadian Cancer Registry (CCR) (Canada) is an administrative survey that collects information on cancer incidence in Canada. The CCR is a collaborative effort between the 13 Canadian provincial and territorial cancer registries and the Health Statistics Division of Statistics Canada, where the data are housed. Ultimate authority and responsibility for the degree of coverage and the quality of the data reside with the provinces and territories. Beginning with reference year 1992, information collected by the provincial and territorial cancer registries has been reported to the CCR. The data that come into the CCR describe both, the individual with the cancer, and the characteristics of the cancer. Longitudinal data are available on each cancer patient, i.e., new primary cancers occurring for previous cancer patients are identified. Since each Canadian province and territory has a legislated responsibility for cancer collection and control, reporting is virtually complete. (NOTE: Statistics Canada does not impute missing data on cancer records.)

The patient-oriented Canadian Cancer Registry (CCR) (Canada) evolved from the event-oriented National Cancer Incidence Reporting System (NCIRS). Beginning with reference year 1992, the CCR replaced the NCIRS as Statistics Canada's vehicle for collecting information about cancer across the country.

The primary objective of the CCR is to provide a large database to study cancer patterns and trends and to monitor differences in cancer risks among different populations. Information about cancer incidence and survival in Canada is generated by the CCR. The CCR is a patient-based system, in which are recorded the kind and number (incidence) of primary cancers diagnosed for each person over a number of years until death.

The information is used for descriptive and analytic epidemiological studies to: identify risk factors for the cancer; plan, monitor and evaluate a broad range of cancer control programs (e.g., screening); and, conduct research in health services and economics.

Database Type

Longitudinal Population Database

- Diagnosis Data Only

Registry

- Specific Disease registry

(Cancer Registry. Longitudinal data available for each cancer patient, i.e., new primary cancers occurring for previous cancer patients are identified.)

Database Source

Other

(13 Canadian provincial and territorial cancer registries.

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.)

Frequency of Data Collection

Ongoing

Frequency of Data Update

Ongoing

(The Master file, for incidence, is updated annually and released at the end of July. When death information is available, it is added to the file and released on an ad hoc basis.)

Years Covered

1992 - Present

Population Type

General Population

(All Canadian residents, alive or dead, who have been diagnosed with cancer)

Patient Type

Inpatient and Outpatient

Emergency Room (ER/ED)
Other
(Some records come from outpatient, inpatient & emergency rooms, but they may also come from autopsy reports, death certificates, and local cancer registry data)

Date of Last Update

June 8, 2017

(The Canadian Cancer Registry was last updated on July 31, 2016;
This profile for the B.R.I.D.G.E. site was last updated on June 8, 2017.)

Population Dynamics

Database Population Size

1 - 5 Million

(The Canadian Cancer Registry is a dynamic database and continues to add new cases of cancer. It started in 1992 and to date ~3 Million cases are included.)

Active Population Size

N/A

(Not applicable)

Annual Change in Population

~180,000 new cancer records/year

(Currently, approximately 180,000 new cases of cancer are added to the Canadian Cancer Registry each year)

Sample Weights - Extrapolation Factors

Data are collected for all units of the target population, therefore no sampling is done

Final Population Size

N/A

(Not applicable, as data collection is ongoing)

Demographic Data

Age of Patients at Data Collection

Yes

(DOB is recorded)

Approximate Percentage of Participants <18 years and those >65 years

<18 years = 1%
>65 years = 61%

Gender Data

Yes

Percentage of Males/Females

Males = 50%
Females = 50%

(Reflective of the Canadian Population)

Ethnicity / Race Data

Geographic Location

13 Canadian provinces and territories

Date of Birth Recorded

Yes

(Year / Month / Day)

Death Recorded

Yes

Date of death, Province/territory or country of death, Death registration number, Underlying cause of death, and information re: autopsy confirming cause of death is recorded.

The patient data are regularly linked to mortality data so that the date and cause of death of every cancer patient is eventually known.

Availability of death certificate / autopsy information

Yes

Autopsy is usually done to confirm the cause of death

Other Demographic Data

No socioeconomic information is included; the file does not include the health insurance number.

Physician & Practioner Info

Physician ID

Physician Specialty

Pharmacy ID

Diagnoses/Signs & Symptoms

Diagnosis Data

Yes

Diagnoses Coded

ICD-9

ICD-10
ICD-O-2
ICD-O-3
(The diagnosis of the neoplasm is coded according to the International Classification of Diseases, 9th revision (through 2000) and then 10th revision (beginning 2001).

ICD-9 Cancer code is used to describe the site of the tumour, and is supplemented with an ICD-O-2 or O-3 Histology and an ICD-O-2 or O-3 Behaviour.)

Diagnoses: Date Parameters

1992 - Present

NOTE: Quebec data are not available for diagnosis - years 2011 to 2014

Diagnoses: Maximum Number of Codes Allowed

Unlimited

Physical Examination Findings

Yes

This is available in an analysable format

Birth Defect Data

Cancer Data

Yes

In addition to information on cancer incidence, data are available about the characteristics of patients with single and multiple tumours, as well as about the nature and frequency of these tumours (staging information is also recorded). 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 has the capability of identifying and eliminating the duplicate reporting of tumours.

The Canadian Council of Cancer Registries recommends that the following tumours should be reported to the CCR:

- 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 except 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); pituitary, craniopharyngeal duct and pineal gland (topographies C75.1, C75.2, C75.3 with behaviour codes of 0);
- EXCEPT all (behaviour codes of 1, 2, 3) skin cancers (topographies C44.0-C44.9) listed as neoplasms, NOS (histologies 8000-8005), epithelial neoplasms (histologies 8010-8046), squamous cell neoplasms (histologies 8050-8084) and basal cell neoplasms (histologies 8090-8110) are not reportable tumours.

Infectious Disease Data

Environmental Exposures

Behavioral Data Elements

Procedures

Procedure Data

However, the Canadian Cancer Registry is starting to investigate standards for including treatment data in another year or two

Procedures Coded

N/A

(Not applicable as not determined yet)

Number of Procedures Coded

N/A

(Not applicable)

Procedure Date Parameters

N/A

(Not applicable)

Laboratory Information

Yes

Minimal information is available, i.e., there is information as to whether the diagnosis is the result of a laboratory test, and some of the factors for staging incorporate laboratory results.

Drug Information

Drug Data

Drug Date Parameters

N/A

(Not applicable)

Drug Regimen & Route

N/A

(Not applicable)

Drug Manufacturer

N/A

(Not applicable)

Drug Dosage

N/A

(Not applicable)

Drug Days Supply

N/A

(Not applicable)

Drug Coding System: Maximum Number

N/A

(Not applicable)

Drug Coding System: Primary

N/A

(Not applicable)

Drug Coding System: Other

N/A

(Not applicable)

Drug Generic Name

N/A

(Not applicable)

Drug Additional Information

N/A

(Not applicable)

Biobanks

Biobank Type

N/A

Human Specimen

N/A

Blood Type

N/A

Biomarkers

N/A

Patient ID

N/A

Number of Samples

N/A

Frequency of Sample Collection

N/A

Pre-diagnostic Sample Collection

N/A

Post-treatment Sample Collection

N/A

Method of Sample Collection

N/A

Age at Sample Collection

N/A

Date of Sample Collection

N/A

Reason for Sample Collection

N/A

Method of Sample Storage

N/A

Length of Sample Storage

N/A

Pathology

N/A

DNA Isolation

N/A

RNA Isolation

N/A

Cell Culture

N/A

Genetic Testing

N/A

Access for Research: Specimens

N/A

Access for Research: Genetic Data

N/A

Access for Research: Epidemiologic Data

N/A

Quality Assurance Procedures

N/A

Family History

N/A

Medical History

N/A

Biobank Linkage

N/A

Genetic-PGx Data

Type of Genetic Database

N/A

Source of Genetic Data

N/A

Specimen Genotyped

N/A

Tissue Form

N/A

Genetic Template

N/A

Gene-Drug Response

N/A

Gene-Disease Relationship

N/A

Gene-Health Outcome Relationship

N/A

Gene-Environment Response

N/A

Method of Imputing Genetic Data

N/A

Genetic Variant Identification

N/A

Genetic Data Level

N/A

Genotyping Method

N/A

Method of Genetic Variant Filtering

N/A

Haplotypes

N/A

Haplogroups

N/A

Variable Number of Tandem Repeats (VNTR)

N/A

Single Nucleotide Polymorphisms (SNPs)

N/A

Variant Type

N/A

Variant Class

N/A

Mutation Indicated

N/A

Position

N/A

Amino Acid Change

N/A

Genotype / Polymorphism

N/A

Allele Frequency

N/A

Linkage Disequilibrium (r²)

N/A

Noncarriers Indicated

N/A

Association Statistics

N/A

Genetic Relatedness Pairing

N/A

Data Sharing: Genetic Data

N/A

Access for Research

N/A

Genetic Data Linkage

N/A

Description of Genetic Data Linkage

N/A

Economic Data

Cost Data

Cost Denomination

N/A

(Not applicable)

Type of Cost Data

N/A

(Not applicable)

Surrogate Cost Data Link

Description of Surrogate Link

N/A

(Not applicable)

Validation & Linkage

Data Validation Against Original Source

Yes

Each cancer registry supplies information to the Canadian Cancer Registry (CCR) (Canada) for each new patient and each new tumour in a standard format. Validity edits verify that each field contains valid entries. Correlation edits check on the compatibility of different data elements within a record and verify that relationships between patient and tumour records make sense. These verifications are done as data are loaded into the CCR database and any records failing edits are rejected and returned to the provincial or territorial cancer registries for verification or correction.

The CCR also employs specialized softwares for internal record linkage to detect duplicate records and for death clearance to find death records. These procedures are done regularly. Conflicting information and other problems with the data uncovered by these processes are resolved through consultation with the reporting provinces and territories. Although the CCR is an administrative data base, the CCR edits ensure consistency across all provincial and territorial cancer registries.

Access to Medical Records

Linkage to Other Databases

Yes

There is linkage to death records to get death information

Brief Description of Linkage Capabilities

Linkages are usually done probablistically using name, sex, date of birth

Administrative Data

Database Contact Data

Client Services
Telephone: +1 613-951-1746
Email: statcan.hd-ds.statcan@canada.ca

Website

http://www.statcan.gc.ca/cgi-bin/imdb/p2SV.pl?Function=getSurvey&SDDS=3207&adm=8&db=imdb&dis=2&lang=en

Alternate Contact

Shirley Bryan
Section Chief
Health Statistics Division
Statistics Canada
Tunneys Pasture Driveway
Ottawa, Ontario K1A 0T6
CANADA
Email: Shirley.Bryan@canada.ca
Telephone: +1 613-612-9925

Source of Database Funding

Government

Sponsoring Government Agency

Government of Canada

Sponsoring Pharmaceutical Manufacturer

N/A

(Not applicable)

Database Usage Restrictions

Public & Private Access

(The CCR data are used by the Public Health Agency of Canada, Health Canada, the North American Association of Central Cancer Registries (NAACCR), the National Cancer Institute of Canada, the Canadian Cancer Society, the International Agency for Research in Cancer (IARC), provincial and territorial ministries of health, pharmaceutical companies, medical and health researchers and the general public.

Requests for custom tabulations can be made by the public, but access to the micro data is limited to those who enter into data sharing agreements (federal government health departments and provincial and territorial cancer registries) or who access the data through Statistics Canada's Research Data Centres.)

Charge for Database Usage

Yes

There is a cost associated with custom tabulations

Data Media Format

PDF Files

(PDF tabular tables)

Number of Publications Using Database

>10

References of Studies Using/Describing Database

1. Goffin JR, Flanagan WM, Miller AB, Fitzgerald NR, Memon S, Wolfson MC, Evans WK. Biennial lung cancer screening in Canada with smoking cessation-outcomes and cost-effectiveness. Lung Cancer. 2016 Nov;101:98-103.

2. Ellison LF. Increasing survival from leukemia among adolescents and adults in Canada: A closer look. Health Rep. 2016 Jul 20;27(7):19-26.

3. Evans WK, Flanagan WM, Miller AB, et al. Implementing Low Dose CT Screening for Lung Cancer in Canada: Implications of Alternative At Risk Populations, Screening Frequency and Duration. Curr Oncol. 2016 Jun;23(3):e179-87

4. Ellison LF. Differences in cancer survival in Canada by sex. Health Rep. 2016 Apr;27(4):19-27.

5. Popadiuk C, Gauvreau CL, Bhavsar M, Nadeau C, Asakawa K, Flanagan WM, Wolfson MC, Coldman AJ, Memon S, Fitzgerald N, Lacombe J, Miller AB. Using the Cancer Risk Management Model to evaluate the health and economic impacts of cytology compared with human papillomavirus DNA testing for primary cervical cancer screening in Canada. Curr Oncol. 2016 Feb;23(Suppl 1):S56-63.

6. Goffin JR, Flanagan WM, Miller AB, Fitzgerald NR, Memon S, Wolfson MC, Evans WK. Cost-effectiveness of Lung Cancer Screening in Canada. JAMA Oncol. 2015 Sep;1(6):807-13.

7. Fitzgerald NR, Flanagan WM, Evans WK, Miller AB; Canadian Partnership against Cancer (CPAC) Cancer Risk Management (CRM) Lung Cancer Working.. Eligibility for low-dose computerized tomography screening among asbestos-exposed individuals. Scand J Work Environ Health. 2015 Jul;41(4):407-12.

8. Flanagan WM, Evans WK, Fitzgerald NR, Goffin JR, Miller AB, Wolfson MC. Performance of the cancer risk management model lung cancer screening module. Health Rep. 2015 May;26(5):11-8.

9. Coldman AJ, Phillips N, Brisson J, Flanagan W, Wolfson M, Nadeau C, Fitzgerald N, Miller AB. Using the Cancer Risk Management Model to evaluate colorectal cancer screening options for Canada. Curr Oncol. 2015 Apr;22(2):e41-50.

10. Ellison LF. Adjusting relative survival estimates for cancer mortality in the general population. Health Rep. 2014 Nov;25(11):3-9.

Add to database collection:

Database Contact

Database Contact Data

Client Services
Telephone: +1 613-951-1746
Email: statcan.hd-ds.statcan@canada.ca

Alternate Contact

Shirley Bryan
Section Chief
Health Statistics Division
Statistics Canada
Tunneys Pasture Driveway
Ottawa, Ontario K1A 0T6
CANADA
Email: Shirley.Bryan@canada.ca
Telephone: +1 613-612-9925

Literature References

References of Studies Using/Describing Database

2. Ellison LF. Increasing survival from leukemia among adolescents and adults in Canada: A closer look. Health Rep. 2016 Jul 20;27(7):19-26.

4. Ellison LF. Differences in cancer survival in Canada by sex. Health Rep. 2016 Apr;27(4):19-27.

6. Goffin JR, Flanagan WM, Miller AB, Fitzgerald NR, Memon S, Wolfson MC, Evans WK. Cost-effectiveness of Lung Cancer Screening in Canada. JAMA Oncol. 2015 Sep;1(6):807-13.

8. Flanagan WM, Evans WK, Fitzgerald NR, Goffin JR, Miller AB, Wolfson MC. Performance of the cancer risk management model lung cancer screening module. Health Rep. 2015 May;26(5):11-8.

10. Ellison LF. Adjusting relative survival estimates for cancer mortality in the general population. Health Rep. 2014 Nov;25(11):3-9.