Call for data

Cancer Case File

Contents of the File

Records of all tumours of the patients who were simultaneously:
  • Resident in a defined registration area at the date of diagnosis of any of their tumours
  • Aged 0-14 or 0-19 years at the date of incidence of any of their tumours
  • Incident in any period of the inclusive calendar years 1990 onwards
  • Diagnosed with a malignant tumour of any site, or with a non-malignant tumour located in the central nervous system (CNS, topography codes C70.0-C72.9 and C75.1-C75.3 of ICD-O-3 [5]) and
  • Registered using standard coding and classification systems for all the required variables

The Required Variables

The table below shows the variables that the case file had to contain and the coding system recommended for each. Alternative coding schemes were accepted if a coding table was provided for all codes or a reference was given to an internationally recognized system.

VARIABLES TO BE INCLUDED IN THE FILE OF CHILDHOOD CANCER CASES AND RECOMMENDED CODING

 Variable  Recommended code
1. Ethnic group/region (optional) Local coding

Ethnic group can be defined by nationality, country of birth, country of birth of the parents, colour of the skin, religion, etc. It should only be included in the cancer cases file if the same variable is available for the population data.
2. Identification number Unique identification code for each tumour or patient within the registry

This is the unique identifier for each tumour or patient to be used in communication between the originating registry and IARC

 
3. Sequence number of a primary tumour
 00=single tumour,
01=1st of more primary tumours
02=2nd of more primary tumours
03=3rd of more primary tumours, etc.

The code used must allow all tumours of one patient to be linked within the submitted database.

 
4. Sex 1=male
2=female
9=unknown
5. Date of birth YYYYDDMM
(99999999=unknown)
6. Date of incidence YYYYDDMM
(99999999=unknown)
7. Date of registration (optional) YYYYDDMM
(99999999=unknown)

Date when case was first recorded in the registry database.

 
8. Age at incidence

Age should be coded as years at the last birthday.

 
9. Site of the tumour ICD-O-3 [5]
10. Laterality of the tumour
 1=unilateral, any side
2=bilateral
3=right
4=left
9=unknown

Requested for eye and kidney tumours (retinoblastoma and nephroblastoma), for testis, and for ovary.

 
11. Histology of the tumour
 ICD-O-3 [5]
12. Behaviour ICD-O-3 [5]
13. Grade and Immunophenotype ICD-O-3 [5]
14. Most valid basis of diagnosis
 ICD-O-3 [5]

As a minimum, the following categories must be distinguished: (0) death-certificate only (DCO) case, (1) clinical and other non-microscopic methods of diagnosis, (2) microscopic verification of diagnosis, (9) unknown.

 
15. Vital status (optional)
1=alive
2=dead
9=unknown

"Unknown" vital status should never occur, because there is always a date when a patient was last confirmed alive (or dead). If a patient is "lost to follow-up", the "vital status" should be set to 1=alive and "date of last contact" to the date when the patient was last confirmed alive.
If "vital status" is provided, "date of last contact" and "date of death" (if applicable) should also be provided.
16. Date of last contact (optional)
YYYYDDMM
(99999999=unknown)

The date of last contact is the date when the patient was last confirmed to be either alive or dead. The vital status on this date is recorded in the variable "vital status".

 
17. Date of death (optional)
YYYYDDMM
(99999999=unknown)

If the date of death is provided, it should be accompanied by the "vital status" coded to 2=dead

 
18. IARC flag (optional) 1=OK
2=OK after verification
0=failed
9=unknown

Indicator of successful pass through IARC checks and conversions. This variable may be used for the convenience of cancer registries.

File Format

The file was to be prepared as a simple text file (fixed format or comma separated) or as a spreadsheet table with one record per line, with the names of variables provided in the top row.