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 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 the ICD-O-3 [3]) 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 must contain and the coding system recommended for each. Any deviation from the recommended coding system should be specified at the time of data submission. Alternative coding schemes may be acceptable, if a coding table is provided for all codes or a reference is given to an internationally recognised system.

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

Variable	Recommended code	Note
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/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 linking all tumours of one patient 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 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 [3]
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 ovary
11. Histology of the tumour	ICD-O-3 [3]
12. Behaviour	ICD-O-3 [3]
13. Grade and Immunophenotype	ICD-O-3 [3]
14. Most valid basis of diagnosis	ICD-O-3 [3]	As a minimum, the following categories must be distinguished: (0) 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, since 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' 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 with 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 should be prepared as a simple text file (fixed format or comma separated) or as a spreadsheet table with one record per line.

The names of variables in the file should be provided (in the top row).

SUBMISSION

The cancer cases file should preferably be uploaded to the Registries Portal at https://cinportal.iarc.fr/ according to the instructions communicated to each potential participant. Submission through this registry portal is strongly recommended. Using the portal increases the security and efficiency of the process.

If it is impossible to use the http sever, other means of submission are e-mailing or postal mailing of the file recorded on an electronic medium. When using e-mail, please make sure that your registry is identified in the "Subject" line.