BC Cancer Registry data set

Description

Information on all cancers diagnosed for BC residents and reported to the BC Cancer Registry.

The data in this file are extracted from the larger BC Cancer Registry Identifying Data (CAIS Warehouse). In BC, cancer is a reportable disease. The sources of registrations are haematology and pathology reports, death certificates, hospital reports, and cancer treatment centres. The BC Cancer Registry is estimated to cover at least 95% of all cancer cases.

Fields available

Agency ID (unencrypted) OR Agency ID (encrypted)	A unique identifier for each BC Cancer patient. Research rationale describing why this field is required must be supplied before it will be considered for release:    Replaced by project-specific identification number.
Sex	The patient's gender
Birth Year	The year of birth as entered. Research rationale describing why this field is required must be supplied before it will be considered for release:
Birth Month**	The patient's month of birth.**   When the day and/or month of diagnosis are unknown the system automatically sets them to '01'.  May be Null. Research rationale describing why this field is required must be supplied before it will be considered for release:
Birth Month Fuzz Code**	A flag set to M when the 'Month of Birth' is unknown and replaced with a system-generated '01' in 'Month of Birth field. Will be blank or Null if 'Month of Birth' is complete.**
Known Birth Month	The month of birth as entered; with a system-generated '00' replacing the month (MM) if unknown. Research rationale describing why this field is required must be supplied before it will be considered for release:
Site Number	A system-generated number assigned to each primary cancer site.
Diagnosis Date***	The date the patient's disease was diagnosed.***  When the day and/or month of diagnosis are unknown the system automatically sets them to '01'. 'Research rationale describing why this field is required must be supplied before it will be considered for release:
Diagnosis Date Fuzz Code***	A flag set to D or M when the day and/or month of the 'Diagnosis Date' are unknown and replaced with a system-generated '01' in the 'Diagnosis Date' field and a system generated '00' in the 'Known Diagnosis Date' Field. Will be blank or Null if 'Diagnosis Date' is complete.***
Known Diagnosis Date	The diagnosis date as entered; with a system generated '00' replacing the the day (DD) and/or month (MM) if unknown. Research rationale describing why this field is required must be supplied before it will be considered for release:
Age at Diagnosis****	The age of the patient at the time of diagnosis.****
Age at Diagnosis Estimated	A flag to indicate 'Age at Diagnosis' was calculated using a birth date and/or diagnosis date where the day or month were unknown.
Diagnostic Confirmation Code*	A code indicating the method of the most accurate diagnostic confirmation.
Diagnostic Confirmation Code Description	The description of the 'Diagnostic Confirmation Code'. -For diagnoses 2004 and onwards.
Method of Confirmation Code*	A numeric code for the highest level used to confirm the patient's diagnosis.
Method of Confirmation Code Description	The description of the 'Method of Confirmation Code'. - For diagnoses prior to 2004.
Location at Diagnosis Code*	The BC postal code or the geographic code of the patient's home address at the time of diagnosis.
Location at Diagnosis Code Description	The description of the 'Location at Diagnosis Code'. Research rationale describing why these fields are required must be supplied before they will be considered for release:
Diagnosis Health Authority (HA) Code*	The HA of the patient's BC postal code at the time of diagnosis.
Diagnosis Health Authority (HA) Code Description	The HA description of the 'Diagnosis Health Authority Code'.
Diagnosis Health Service Delivery Area (HSDA) Code*	The HSDA code of the patient's BC postal code at the time of diagnosis.
Diagnosis Health Service Delivery Area (HSDA) Code Description	The HSDA description of the 'Diagnosis Health Service Delivery Area Code'.
Diagnosis Local Health Area (LHA) Code*	The LHA of the patient's BC postal code at the time of diagnosis.
Diagnosis Local Health Area (LHA) Code Description	The LHA description of the 'Diagnosis Local Health Area Code'. Research rationale describing why these fields are required must be supplied before they will be considered for release:
Cancer Care Centre Health Service Delivery Area (HSDA)  Code*	The alphabetic code for the BC Cancer centre assigned to the BC HSDA of the patient's BC postal code at the time of diagnosis.
Cancer Care Centre Health Service Delivery Area (HSDA) Code Description	The description of the 'Cancer Care Centre HSDA Code'.
Tumour Group Code*	A code indicating the tumour 'group' of the patient's specific disease record, based on the site and/or histology (e.g., Breast, Head & Neck).
Tumour Group Code Description	The description of the 'Tumour Group Code'.
Tumour Subgroup Code*	A code indicating the subtumour  'group' of the patient's specific disease record, based on the site and/or histology where applicable (e.g., Prostate, Cervix).
Tumour Subgroup Code Description	The description of the 'Tumour Subgroup Code'.
Laterality Code*	The numeric code for the anatomical side of the patient's distinct primary disease, where applicable.
Laterality Code Description	The description for the 'Laterality Code'.
Site Code*	The ICD-O-3 topography (site) code for the patient's distinct primary disease. (Diagnosis Dates > 31 December 2000 ICD-O Third Edition is consistently used for all diagnosis coding for patients. (Diagnosis Dates = 01 January 1992 - 31 December 2000 ICD-O Second Edition (ICD-O-2) was used but codes have been converted forward to ICD-O-3. Diagnosis Dates = 01 January 1979 to 31 December 1991, ICD-O First Edition (ICD-O-1) was used but codes have been converted forward to ICD-O-3).
Site Code Description	The description for the 'Site Code'.
Histology 1 Code*	The highest ICD-O-3 morphology (histology) code of the patient's distinct primary disease. (Diagnosis Dates > 31 December 2000 ICD-O Third Edition is consistently used for all diagnosis coding for patients. (Diagnosis Dates = 01 January 1992 - 31 December 2000 ICD-O Second Edition (ICD-O-2) was used but codes have been converted forward to ICD-O-3. Diagnosis Dates = 01 January 1979 to 31 December 1991, ICD-O First Edition (ICD-O-1) was used but codes have been converted forward to ICD-O-3).
Histology 1 Code Description	The description of the 'Histology 1 Code'.
Behavior Code*	The fifth digit of the patient's ICD-O-3 morphology entered in the 'Histology 1 Code' field.
Behavior Code Description	The Description of the 'Behavior Code'.
Histology 2 Code*	The second highest ICD-O-3 morphology (histology) code of the patient's distinct primary disease, if applicable. (Diagnosis Date > 31 December 2000 ICD-O Third Edition is consistently used for all diagnosis coding for patients. (Diagnosis dates = 01 January 1992 - 31 December 2000 ICD-O Second Edition (ICD-O-2) was used but codes have been converted forward to ICD-O-3. Diagnosis dates = 01 January 1979 to 31 December 1991, ICD-O First Edition (ICD-O-1) was used but codes have been converted forward to ICD-O-3).
Histology 2 Code Description	The description for the 'Histology 2 Code'.
Histology 3 Code*	The third highest ICD-O-3 morphology (histology) code of the patient's distinct primary disease, if applicable. (Diagnosis Date > 31 December 2000 ICD-O Third Edition is consistently used for all diagnosis coding for patients. (Diagnosis dates = 01 January 1992 - 31 December 2000 ICD-O Second Edition (ICD-O-2) was used but codes have been converted forward to ICD-O-3. Diagnosis dates = 01 January 1979 to 31 December 1991, ICD-O First Edition (ICD-O-1) was used but codes have been converted forward to ICD-O-3).
Histology 3 Code Description	The description of the 'Histology 3 Code'.
Collaborative Stage - AJCC Edition	Identifies which collaborative stage AJCC Edition is in use (based on diagnosis year)
Collaborative Stage -  Anatomic/Prognostic	The collaborative stage 'anatomic stage'/'prognostic group' stage grouping of the patient's disease.
Collaborative Stage - Tumour Size (Clinical)	The collaborative stage representing the tumour size and/or any extension on clinical evaluation.
Collaborative Stage - Tumour Size (Pathological)	The collaborative stage representing the tumour size and/or any extension on pathological evaluation.
Collaborative Stage - Lymph Node (Clinical)	The collaborative stage representing the extent of (or lack of) regional lymph node involvement on clinical evaluation.
Collaborative Stage - Lymph Node (Pathological)	The collaborative stage representing the extent of (or lack of) regional lymph node involvement on pathological evaluation.
Collaborative Stage - Distant Spread/Metastases (Clinical)	The collaborative stage indicating distant spread or metastases on clinical evaluation.
Collaborative Stage - Distant Spread /Metastases (Pathological)	The collaborative stage indicating distant spread or metastases on pathological evaluation.
Collaborative Stage Schema Code*	The collaborative stage schema that the tumour relates to.
Collaborative Stage Schema Code Description	The description of the 'Collaborative Stage Schema Code'.

NOTES:

*It is recommended that both Code and Description fields be requested together in order to have a complete understanding of the data elements.

**It is recommended that the Month of Birth and Month of Birth Fuzz fields be requested together. If the month is missing, the system defaults to '01' in the Month of Birth field.  The Month of Birth Fuzz is a flag (M) indicating that the month of birth is missing and is replaced with the system-generated '01' in the Month of Birth field.

***It is recommended that Diagnosis Date and Diagnosis Date Fuzz be requested together.  If the day and/or month of diagnosis are missing, the system defaults them to '01' in the Diagnosis Field. The Diagnosis Date Fuzz is a flag (D and/or M) indicating that the day and/or month of diagnosis is missing and is replaced with the system-generated '01' in the Diagnosis Date field.

****Time of Diagnosis = Diagnosis Date

Inclusions

• All cases with a BC postal code or province code are included from 1985 onward.

Exclusions

• Benign cases are excluded
• All cases from outside BC or outside Canada are excluded

Timeliness of data

A disease record is entered into our cancer information system approximately 15 months from the date the patient was diagnosed.  In order to put a diagnosis on our system we have to receive the information from outside provincial hospitals/pathology labs.  After a patient is referred to a cancer treatment centre (if they are referred) then ideally this more detailed disease and treatment information is entered into our system within 2 to 3 months from the date the patient was diagnosed (depending on how soon the patient was referred to be seen at BC Cancer).  Each diagnosis year must be 100% complete before we can produce our population statistics.

The BC Cancer Registry reports cancer incidence and mortality on an annual basis to the national Canadian Cancer Registry (CCR) (maintained by Statistics Canada). CCR puts out a call for data each year along with the data submission date that each provincial and territorial cancer registry are required to meet; this submission date varies year to year and is determined by factors internal to Statistics Canada. 

After we submit our data to the national registry, CCR reviews it and sends back reports of data requiring remediation; we make necessary changes to the data and re-submit it back to the CCR. CCR also conducts two annual internal linkages; i) national record linkage where each provincial and territorial cancer registry is required to return records for residents of other jurisdictions to the appropriate provincial and territorial cancer registry to resolve any duplication of cases and ii) national death clearance where the patient data is linked to the Canadian Vital Statistics Death Database and any conflicting/duplicate data is resolved with each provincial and territorial cancer registry.

It is at this time that we consider the diagnosis year complete and can proceed to run our statistics for publication and release the complete diagnosis year via data requests and data sharing agreements (e.g. PopData BC).

Example of how the submission cycle works:

• Diagnosis Year 2011 will be submitted to CCR in 2013
• Diagnosis Year 2012 will be submitted to CCR in 2014
• Diagnosis Year 2013 will be submitted to CCR in 2015

Data changes over time

• Over the years, coding for cancers in BC has changed based on revisions to the WHO International Classification of Diseases for Oncology (ICD-O). The Cancer Incidence data files held by Population Data BC include fields for ICD-O codes in versions originally entered in the database (ICD-O-1; ICD-O-2) and the current version (ICD-O-3):
  • ICD-O-1 was used prior to December 31, 1991
  • ICD-O-2 was used from January 1, 1992 until December 31, 2000
  • ICD-O-3 has been used since January 1, 2001 to code topography (site) and histology (morphology) of the tumour

References

• Additional information on the BC Cancer Registry is available on the BC Cancer website