Canadian Cancer Registry (CCR) (Canada)

Field Names
Records
Coordinating Country
Canada
Region

13 Canadian provinces and territories

Brief Database Description

The Canadian Cancer Registry (CCR) 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) 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 are 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 each year, barring any delays such as due to the COVID-19 pandemic 2020-2021. 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
Ongoing

(The Canadian Cancer Registry is updated on an ongoing basis, barring any delays such as due to the COVID-19 pandemic in the years 2020-2021;
This profile was last updated for the B.R.I.D.G.E. site on September 28, 2021.)

Field Names
Records
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, over 4 Million cases are included.)

Active Population Size
1 - 5 Million

Cancer incidence data are linked to Vital Statistics data every other year to determine the vital status of the individuals on file. As of the end of 2017, there were approximately 1,800,000 individuals who were still alive (not linked to death records).

Annual Change in Population
~190,000 new cancer records/year

(Currently, approximately 190,000 new cases of cancer are added to the Canadian Cancer Registry each year)

Sample Weights - Extrapolation Factors
No

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)

Field Names
Records
Age of Patients at Data Collection
Yes

(DOB is recorded)

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

< 18 years = 0.8%
> 65 years = 56%

Gender Data
Yes
Percentage of Males/Females

Males = 50%
Females = 50%

(Reflective of the Canadian Population)

Ethnicity / Race Data
No
Geographic Location

13 Canadian provinces and territories

Information can be extracted down to the 6-digit postal code. A concordance file is available for all census geographies down to the census tract, as well as health regions.

The database has GIS capabilities, but disclosure-avoidance rules set a lower limit to the level of granularity (Forward Storation Area, i.e., first 3 digits of the postal code).

Date of Birth Recorded
Yes

(Year / Month / Day)

Death Recorded
Yes

Data include:
- 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

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

Field Names
Records
Physician ID
No
Physician Specialty
No
Pharmacy ID
No
Field Names
Records
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: Diagnosis data for Quebec have not been available since 2010

Diagnoses: Maximum Number of Codes Allowed
Unlimited
Physical Examination Findings
Yes

This is available in an analysable format

Birth Defect Data
No
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
No
Environmental Exposures
No
Behavioral Data Elements
No
Field Names
Records
Procedure Data
Yes

However, these are only available through linkage to surgery data in the Discharge Abstract Database (DAD) and the National Ambulatory Care Reporting System (NACRS).

Procedures Coded
CCI

Both DAD and NACRS are based on the CCI coding system, and, as mentioned above, surgery data are only available via linkage to DAD and NACRS.

Number of Procedures Coded
40

(20 for DAD and 20 for NACRS so, in theory, a maximum of 40 per individual)

Procedure Date Parameters
1994 - 2015

(As of Summer 2021, procedure data are available via linkage only for the years 1994 through 2015; however, linkage will likely be updated in the coming years.)

Laboratory Information
Yes

However, 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.

Field Names
Records
Drug Data
No
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)

Field Names
Records
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
Field Names
Records
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
Field Names
Records
Cost Data
No
Cost Denomination
N/A

(Not applicable)

Type of Cost Data
N/A

(Not applicable)

Surrogate Cost Data Link
No
Description of Surrogate Link
N/A

(Not applicable)

Field Names
Records
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
No
Linkage to Other Databases
Yes

There is linkage to death records to get death information. (Linkages are usually done probabilistically using name, sex, date of birth.)

Brief Description of Linkage Capabilities

The CCR has been linked to surgery data from the Discharge Abstract Database (DAD) and the National Ambulatory Care Reporting System (NACRS).

Field Names
Records
Database Contact Data

Client Services
Statistics Canada
Tunneys Pasture Driveway
Ottawa, Ontario K1A 0T6
CANADA
Telephone: +1 613-951-1746
Email: statcan.hd-ds.statcan@canada.ca

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

Erik Dorff
Section Chief
Health Statistics Division
Statistics Canada
Tunneys Pasture Driveway
Ottawa, Ontario K1A 0T6
CANADA
Email: erik.dorff@statcan.gc.ca
Phone: +1 613-863-7948

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

Microdata files are accessible for free through the Research Data Centre network for any researcher with a valid institutional affiliation (students, Faculty, post-docs, etc.). Customized tabulations are available upon request but involve fees that are contingent on the complexity of the request and the number of tables requested.

Data Media Format
SAS / SPSS
Excel / CSV

(All formats are possible: SAS, Excel, csv, etc.; depends on the client's request.)

Number of Publications Using Database
>10
References of Studies Using/Describing Database

1. Ellison LF. The cancer survival index: Measuring progress in cancer survival to help evaluate cancer control efforts in Canada. Health Rep. 2021 Sep 15;32(9):14-26.

2. Hwee, J & Bougie, E. Do cancer incidence and mortality rates differ among ethnicities in Canada? Health Rep. 2021 Aug 18; 32(8):3-17.

3. Yong, JH & Garner, RE. Colorectal cancer screening during the COVID-19 pandemic: Impact of paused screening and strategies to reduce delays. StatCan COVID-19. 2021 Jun 17:1-8.

4. Jamal, S, Jones C, Walker J, Mazereeuw M, Sheppard AJ, Henry D, Marrett LD. Cancer in First Nations people in Ontario, Canada: Incidence and mortality, 1991-2010. Health Rep. 2021 Jun 16;32(6):14-28.

5. Ellison LF, Xie L & Sung L . Trends in paediatric cancer survival in Canada, 1992-2017. Health Rep. 2021 Feb 17;32(2):3-15.

6.Demers A, Qiu Z, Dewar R & Shaw A. Validation of Canproj for projecting Canadian cancer incidence data. Health Prom Chron Dis Prev Can. 2020 Sep; 40(9): 267-280.

7. Brenner DR, Weir HK, Demers AA, Ellison LF, Louzado C, Shaw A, Turner D, Woods RR & Smith LM. Projected estimates of cancer in Canada in 2020. CMAJ. 2020 March 02; 192(9):E199-E205. 

8. Ellison LF & Bushnick T. Changing trends in thyroid cancer incidence in Canada: A histologic examination, 1992-2016. Health Rep. 2020 Jan 15;31(1):15-25.

9. LeBlanc AG, Demers, A & Shaw, A. Recent trends in prostate cancer in Canada. Health Rep. 2019 Apr 17;30(4):12-17.

10. Bryan S, Masoud H, Weir, HK, Woods R, Lockwood G, Smith L, Brierlay J, Gospodarowicz M & Badets N. Cancer in Canada: Stage at diagnosis. Health Rep. 2018 Dec 19; 29(12):21-25.

Database Contact
Database Contact Data

Client Services
Statistics Canada
Tunneys Pasture Driveway
Ottawa, Ontario K1A 0T6
CANADA
Telephone: +1 613-951-1746
Email: statcan.hd-ds.statcan@canada.ca

Alternate Contact

Erik Dorff
Section Chief
Health Statistics Division
Statistics Canada
Tunneys Pasture Driveway
Ottawa, Ontario K1A 0T6
CANADA
Email: erik.dorff@statcan.gc.ca
Phone: +1 613-863-7948

References of Studies Using/Describing Database

1. Ellison LF. The cancer survival index: Measuring progress in cancer survival to help evaluate cancer control efforts in Canada. Health Rep. 2021 Sep 15;32(9):14-26.

2. Hwee, J & Bougie, E. Do cancer incidence and mortality rates differ among ethnicities in Canada? Health Rep. 2021 Aug 18; 32(8):3-17.

3. Yong, JH & Garner, RE. Colorectal cancer screening during the COVID-19 pandemic: Impact of paused screening and strategies to reduce delays. StatCan COVID-19. 2021 Jun 17:1-8.

4. Jamal, S, Jones C, Walker J, Mazereeuw M, Sheppard AJ, Henry D, Marrett LD. Cancer in First Nations people in Ontario, Canada: Incidence and mortality, 1991-2010. Health Rep. 2021 Jun 16;32(6):14-28.

5. Ellison LF, Xie L & Sung L . Trends in paediatric cancer survival in Canada, 1992-2017. Health Rep. 2021 Feb 17;32(2):3-15.

6.Demers A, Qiu Z, Dewar R & Shaw A. Validation of Canproj for projecting Canadian cancer incidence data. Health Prom Chron Dis Prev Can. 2020 Sep; 40(9): 267-280.

7. Brenner DR, Weir HK, Demers AA, Ellison LF, Louzado C, Shaw A, Turner D, Woods RR & Smith LM. Projected estimates of cancer in Canada in 2020. CMAJ. 2020 March 02; 192(9):E199-E205. 

8. Ellison LF & Bushnick T. Changing trends in thyroid cancer incidence in Canada: A histologic examination, 1992-2016. Health Rep. 2020 Jan 15;31(1):15-25.

9. LeBlanc AG, Demers, A & Shaw, A. Recent trends in prostate cancer in Canada. Health Rep. 2019 Apr 17;30(4):12-17.

10. Bryan S, Masoud H, Weir, HK, Woods R, Lockwood G, Smith L, Brierlay J, Gospodarowicz M & Badets N. Cancer in Canada: Stage at diagnosis. Health Rep. 2018 Dec 19; 29(12):21-25.