Call for data

Cancer cases file

The ACCIS database will contain all neoplasms occurring in the central nervous system (CNS) and all malignant neoplasms in other sites of the body registered in the participating cancer registries in patients younger than 20 years when first diagnosed in the 1970s or later. All second and subsequent tumours of these patients will also be included, irrespective of the age at diagnosis.

The target age range of 0-19 years is reduced to 0-14 years for the contributions from the paediatric cancer registries collecting data on tumours occurring in children younger than 15 years.

CONTENTS OF THE FILE
Based on the scope of the ACCIS database described above, the cancer cases file should contain records of all tumours of the patients who were simultaneously:
  • resident in the defined registration area at the date of diagnosis of any of their tumours,

  • aged 0-14 years or 0-19 years at the date of incidence of any of their tumours,

  • older than 15 years or older than 20 years at the date of incidence of a second or subsequent cancer, if they were younger than 20 years when diagnosed with their first cancer,

  • incident in any period of the inclusive calendar year 1970 and all successive years (until the most recent available),

  • diagnosed with a malignant tumour of any site,

  • diagnosed with a non-malignant tumour located in the central nervous system (CNS), and

  • recorded in an electronic form using standard coding and international classification systems.

THE REQUIRED VARIABLES
The table below shows the variables that the case file must contain and the coding system recommended for each. Any unavoidable deviation from the recommended coding system should be commented upon at the time of data submission. Alternative coding schemes may be accepted, provided that a coding table is provided for all codes or a reference is given to an internationally recognized system.

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

 Variable  Recommended code
1. Ethnic group/Region (optional)

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
Local coding
2. Identification number

This is the unique identifier for each tumour/patient to be used in communication between the originating registry and IARC
Unique identification code for each tumour or patient within the registry
3. Sequence number of a primary tumour

The code used must allow linking all tumours of one patient within the submitted database
00=single tumour,
01=1st of more primary tumours
02=2nd of more primary tumours
03=3rd of more primary tumours, etc.
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)

Date when case first recorded in the registry database
YYYYDDMM
(99999999=unknown)
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

Requested for eye and kidney tumours (retinoblastoma and nephroblastoma), for testis and ovary
1=unilateral, any side
2=bilateral
3=right
4=left
9=unknown
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

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
ICD-O-3 [3]
15. Vital status

"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.
1=alive
2=dead
9=unknown
16. Date of last contact

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

If the date of death is provided, it should be accompanied with the Vital status coded to 2=dead
YYYYDDMM
(99999999=unknown)
18. IARC flag (optional)

Indicator of successful pass through IARC checks and conversions. This variable may be used for the convenience of cancer registries.
1=OK
2=OK after verification
0=failed
9=unknown

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 be submitted through the Registries Portal at https://cinportal.iarc.fr according to the instructions on the portal. To access the portal, each potential participant has received the relevant credentials. If this is not the case, please contact us.