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INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES
Cancer Incidence in Five Continents
Volume X
Call for Data
Data specification
Notes for submission
1 September 2011
INTRODUCTION................................................................................................................................................ 2
ESSENTIAL COMPONENTS FOR CONTRIBUTION TO CI5 VOLUME X ............................................. 3
CANCER CASES FILE ...................................................................................................................................... 5
POPULATION FILE......................................................................................................................................... 10
MORTALITY FILE .......................................................................................................................................... 12
CODING FILE................................................................................................................................................... 14
QUESTIONNAIRE............................................................................................................................................ 14
INTRODUCTORY TEXT ................................................................................................................................ 14
REFERENCES................................................................................................................................................... 16
CI5 VOLUME X DATA CALL REQUIREMENTS AT A GLANCE .......................................................... 17
Cancer Incidence in Five Continents, volume X: Call for Data
Introduction
Cancer Incidence in Five Continents (CI5) has now become an invaluable resource for cancer
researchers and those involved in developing cancer control programs in all parts of the world. Since
the first publication in 19661, nine volumes of CI5 have now been published providing comparable
cancer incidence data from diverse geographic populations. The ninth volume2 contained information
from 300 cancer registries in 61 countries. CI5 represents a vitally important ongoing collaboration
between population based cancer registries around the world, the International Association of Cancer
Registries (IACR) and the International Agency for Research on Cancer (IARC).
The Editorial Board of the volume X is composed of IACR and IARC representatives.
Freddie Bray (IARC)
David Brewster (UK, IACR)
Jacques Ferlay (IARC)
David Forman (IARC)
Charles Gombe-Mbalawa (Republic of Congo, IACR)
Betsy Kohler (USA, IACR)
Marion Piñeros-Petersen (Colombia, IACR)
Eva Steliarova-Foucher (IARC)
Rajaraman Swaminathan (India, IACR)
Volume X (CI5-X) will include incident cancers for the period 2003-2007 and this document provides
detailed instructions on the content and process of the submission. Consistent with previous practice,
submitted datasets will be carefully evaluated by the Editorial Board to ensure analyses published in
CI5 are of appropriate quality. For relevant registries, the datasets will also be used to update the
annual time trend series available online in CI5plus.
Alongside the publication of CI5-X and the update to CI5plus, efforts will be made to ensure on-line
publication of all submitted datasets in a variety of continental publications for which the Cancer in
Africa volume18 serves as an example.
A further innovation for Volume X will be that the Registries Portal at IARC is available for upload of
all data on-line and completing the CI5-X questionnaire. Instructions for access to and use of the
portal are also contained in this document.
Please remember that, as an IACR publication, datasets will only be considered from IACR member
registries and those who are not yet members should consult the IACR website
(http://www.iacr.com.fr/) for application details.
The IARC CI5 Secretariat ([email protected]) is at your disposal for any clarifications.
Remember: the deadline for data submission will be 01 December 2011 and it is essential that this
is respected.
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Cancer Incidence in Five Continents, volume X: Call for Data
Essential components for contribution to CI5 volume X
The following files must be submitted together with the completed questionnaire:
1. Cancer Cases File
2. Population File
3. Mortality File
4. Coding File - required to specify any differences in coding of variables from the
standard guidelines.
Registries submitting data for CI5 volume X and able to provide annual incidence data from
1993 or earlier may also be included in CI5plus subject to their agreement.
Registries portal
A fully automated mechanism has been set up for submissions to CI5-X at
https://cinportal.iarc.fr. Where possible, all registries are requested to use this facility for
the submission of all files and for completion of the questionnaire.
To access the portal, a registry-specific username and password will be required. These will
be communicated to each registry individually.
Using
•
•
•
•
•
•
•
•
the portal will allow the registries to benefit from the following features:
High security and speed of data transfer
No packaging or postage
No need for accompanying correspondence
On-line confirmation of participation
Automated data submission and its acknowledgement
Storage of the submission information
On-line monitoring of the progress of data processing at IARC
One submission for several projects
Permission to use data
During submission on the portal it is necessary to check the correct Call for data box i.e.
‘CI5-X’ and, where relevant, ‘CI5plus’ among the available opened calls. Selection is
equivalent to providing permission to use the submitted material for Volume X of Cancer
Incidence in Five Continents (or CI5plus). The submitted data will not be used for any other
purpose or projects without additional explicit permission from the registry.
ENCR member registries
European registries who have submitted data in response to the ENCR Call for data of 21
May 2010 are not required to resubmit, as long as the data requested for CI5-X represent a
subset of their previous submission. They will nevertheless have to confirm their
participation in CI5-X on the portal and complete the CI5 questionnaire.
File preparation
There are no specific requirements for the names of the files. However, during the upload
procedure on the Portal, users are required to identify each file type (Cancer Cases,
Mortality, Population or Coding), so as to permit automatic naming for further processing.
These files should NOT be zipped together. The Cancer Cases File may be zipped
individually (especially if the file is large). Files may be protected by a password, which is
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Cancer Incidence in Five Continents, volume X: Call for Data
also to be provided on the portal.
It is possible to upload up to 500 MB in a single submission process. If the zipped file is
larger than that, it is recommended to split it (e.g. by year of registration) and proceed with
multiple submissions.
Instructions are provided on the portal for each step required for the file upload. Specific
help is available on request by emailing [email protected].
Other submission paths
It is possible to submit the files on a CD or by e-mail ([email protected]), although submission
through the new portal is strongly recommended.
Deadline for submission: 01 December 2011
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Cancer Incidence in Five Continents, volume X: Call for Data
Cancer Cases File
Inclusion criteria
Time Period
The target incidence period for CI5-X is 2003-2007 and data from 3 consecutive years
within this time period are the minimum that will be considered for publication.
Cancer registries are, however, requested to submit data from all years available prior to
2003. This will allow the editors to identify multiple tumours and to examine time trends
that could indicate changes in registration rates.
Data from incidence year 2008 (and later) may also be included if complete. These data will
not be published in CI5-X but may be included for the CI5plus update; provided that they
meet the relevant quality standards.
Tumour
All primary tumours, including, if collected:
• Basal cell and squamous cell carcinomas of skin
• Non-malignant tumours of central nervous system (CNS)
• Non-malignant tumours of the urinary bladder
Age
•
Cancers diagnosed at all ages should be included.
Multiple primary tumours
All multiple primary tumours should be retained in the file.
Requested quality and coding
Data should be verified and corrected before the submission using, for example,
IARCcrgTools. Note that for some combinations of site/morphology/behaviour accurate
recoding requires active decisions. Users can use the IARC flag variable to mark validated
records (see variable 15 IARC flag in Table 1).
• The coding schemes outlined in detail in Table 1 should be used.
• In particular, ICD-O-3 coding system is requested for all relevant variables;
IARCcrgTools software could be used to convert coding from other systems.
Requested format
In general, the files should be formatted as follows:
• One record per line (case listing)
• Delimited field format
• Predefined format and record layout outlined below
• Mandatory variables must be completed for all records
• Optional variables must be completed for all records, if provided
In files containing data for several populations, each population should be distinguished by
a specific code and the code should be provided in a separate file and submitted with the
data.
Requested accompanying information
Coding scheme for all variables using coding other than that recommended in Table 1.
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Cancer Incidence in Five Continents, volume X: Call for Data
Table 1. Cancer Cases File: record layout and recommended coding
(F=Numeric, A=Alphanumeric)
Variable
Format
Recommended coding of values
Regular
Missing or
Unknown
Definition, notes
1. Ethnic group or region
A5
99999
A list of codes must by provided
2. Patient identification number •
A20
Not allowed
A unique identifier of the patient in the originating registry,
which is not necessarily the official personal identification
number.
3. Tumour sequence number•
F2
99
A sequential number of all primary tumours diagnosed over
the lifetime of a person in chronological order and included
in the dataset.
YYYYMMDD
99999999
If date of birth cannot be provided in full, the next
possible/available detail should be included, such as
YYYYMM or YYYYDD
1=Male
9
00=single tumour
st
01=1 of more
02=2nd of more
03=3rd of more
Etc.
4. Date of birth•
F8
5. Sex at birth•
F1
6. Date of incidence•
F8
YYYYMMDD
YYYY9999
See section Date of incidence below
7. Date of registration
F8
YYYYMMDD
99999999
Date when case first recorded in the registry database
8. Age in years•
F3
999
Latest completed year of age at the time of diagnosis
9. ICDO-3 Topography•
A4
2=Female
<1yr=000; >99yrs=100
ICD-O-3
Not allowed
Example: C531 or 531
• Mandatory variable (if registries have any difficulties in providing any mandatory item, please contact the CI5 secretariat for advice)
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Cancer Incidence in Five Continents, volume X: Call for Data
Variable
Format
Recommended coding of values
Regular
Missing or
Unknown
Definition, notes
10. ICDO-3 Morphology•
F4
ICD-O-3
Not allowed
Example: 8170
11. ICD-O-3 Behaviour•
F1
ICD-O-3
Not allowed
Example: 3
12. Basis of diagnosis•
F1
ICD-O-3
9
Minimum coding requirements
9
2=Dead
Coding of ‘Lost to follow-up’ should be as follows: ‘Vital
status’ should be set to 1 (alive) and ‘Date of end of followup’ to the latest date when the patient was confirmed alive.
YYYYMMDD
Actual date if known
0=DCO
1=Clinical
2=Microscopic
13. Vital status at last contact
14. Date of death
15. Date of last contact
16. IARC flag
F1
F8
F8
F1
1=Alive
YYYYMM99
If only month and year are known
YYYY9999
If only year is known
99999999
If no information is known
YYYYMMDD
1=OK
2=OK after verification
Actual date if known
YYYYMM99
If only month and year are known
YYYY9999
If only year is known
99999999
If no information is known
9
Indicator of successful pass through IARC checks and
conversions
0=failed
• Mandatory variable (if registries have any difficulties in providing any mandatory item, please contact the CI5 secretariat for advice)
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Cancer Incidence in Five Continents, volume X: Call for Data
Additional information on Cancer Cases File
Ethnic group
If the registry data permits analysis by ethnic group (or a subgroup based on other criteria
e.g. religion), the relevant category should be appropriately coded in the Cancer Cases File
AND the Population File for the same sub-populations should also be submitted.
Patient identification number
This is the unique number (or character string) permitting the registry identification of the
record in their files. The patient identification number should be unique to ensure that if the
same individual is reported again to the registry, s/he will be recognized as being the same
person. This could also be a unique (national) personal identification number used for other
purposes (birth register, insurance, etc.).
The submitted information should not allow the identification of a person in real life. In
conjunction with the variable ‘Tumour sequence number’ it allows the editors to recognize
multiple tumours as registered by the registry. Names of patients should not be
included in the Cancer Cases File.
Tumour sequence number
This number, allocated by the registry, permits distinction as well as order of occurrence of
different tumours registered for the same patient.
Dates
The calendar year in all dates should always be coded to four digits (with century: for
example, 1903, 2003, etc.).
Age
Cases less than one year of age should be coded as age 0. Do not use the same code for
cases aged under one year and over 99 years. Code for unknown age should be 999. If a
different code is used, it must be described in the Coding File.
Date of incidence
Month and year are required as a minimum.
Registries commonly define incidence date from one of a number of available dates and use
hierarchal rules for determination of the date of incidence. For consultation, these are
available in print and online:
• ENCR definition6
• IARC/IACR definition11
• SEER definition13
Basis of diagnosis
ICD-O-3 coding is recommended. As a minimum, the provided information should allow
distinguishing the following four crude categories of the method of cancer diagnosis:
• Death certificate only (DCO)
• Clinical only
• Microscopically verified
• Unknown.
Death certificate only – the definition14:
Cases registered from ‘Death certificate only’ (DCO) are those cancers for which no other
information than a death certificate mentioning cancer could be obtained. This must not be
confused with the cases first notified by a death certificate (death certificate notification 8
Cancer Incidence in Five Continents, volume X: Call for Data
DCN) or those first initiated by a death certificate (death certificate initiated - DCI) cases,
which are distinct from DCN cases in that they comprise cancer cases registered after the
trace-back procedures have been completed, either from a source identified through the
trace-back procedures, or as DCO cases – those for which an additional source cannot be
found (see Figure 1).
Figure 1: using death certificates to identify new cases of cancer
Vital status
This is not a required variable but can be readily provided by many registries. Together with
“date of death” and “date of end of follow-up”, its availability would facilitate survival
analyses. Use of data in such analyses will not be made without consent / collaboration of
each Registry, following distribution of a detailed project protocol. These analyses are not
part of the current CI5-X proposal, but submission of these data may be useful for setting up
future projects.
Date of death
This is not a required variable but can be readily provided by many registries.
Date of last contact
Date of last contact is the date when the patient was last confirmed to be either alive or
dead. This is not the date when an attempt for contact was made, if the current vital status
could not be confirmed.
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Cancer Incidence in Five Continents, volume X: Call for Data
Population File
The possible sources of population data are from official censuses, or from
intercensal/postcensal estimates provided by Vital Statistics Departments or equivalent.
Census data (with reference date) should be supplied for the censuses occurred during,
before and after the years covered in your dataset of cancer records.
Any official estimates of the population made during the period should also be sent,
preferably for each individual calendar year.
The references to all sources of population data are requested and should be provided in the
questionnaire. This information will be printed in the publication and will appear under the
population pyramid of the registry page.
Any unpublished estimates should be documented in the questionnaire. If no population data
are available for this period, any available data should be submitted, clearly describing their
source, reference area and period.
Scope
The Population File should correspond to the Cancer Cases File with respect to:
• Sub-population (for example ethnic group, if applicable)
• Registration area
• Time period
• Sex
• Age-range
If possible, population figures should give the mid-year (as at 1st July) estimates (or midperiod estimates) for each sub-category.
File format
Ideally, the file should contain the population estimate for every combination of:
• Calendar year
• Sex
• Age (single year if possible as in Example 1, or standard 18 age-groups otherwise as
in Example 2, using the following codes for the age groups: 1=0-4, 2=5-9, 3=10-14,…
17=80-84, 18=85+). The coding of the age groups should be appropriately adjusted
and documented if there are less then 18 age groups available.
Each line of the Population File should include number of residents for the combination of
calendar year, sex and age, as shown below (Example 1).
Alternatively, the next finest level of detail available should be provided, for example number
of residents for the combination of calendar period, sex and 5-year age groups, or other as
appropriate.
Data for each sub-population (constituting registry or ethnic group) should be recorded in a
separate file or worksheet.
The codes for sex should be the same as in the Cancer Cases File.
Accompanying information
• Any coding schemes used other than those recommended must be documented in the
Coding File.
• Reference to the source of population data must be provided in the questionnaire.
• Any modification from the official estimates must be described.
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Cancer Incidence in Five Continents, volume X: Call for Data
Additional notes
Ethnic group
If the submitted Cancer Cases File contains information on ethnic group, the same ethnic
division must be used in the Population File and the same codes for available categories
should be used in both files.
Age
Please provide the numbers of persons of unknown age if applicable, as they are included in
the calculation of summary rates.
Example 1:
Example 2:
Year
Sex
Age unit
Number of
residents
Year
Sex
Age group
Number of
residents
1991
1
0
N1,1,0
1991
1
1
N1,1,1
1991
1
1
N1,1,1
1991
1
2
N1,1,2
1991
1
2
N1,1,2
1991
1
3
N1,1,3
1991
1
………
………
1991
1
………
………
1991
1
100
N1,1,100
1991
1
18
N1,1,18
1991
2
0
N1,2,0
1991
2
1
N1,2,1
1991
2
1
N1,2,1
1991
2
2
N1,2,2
1991
2
………
………
1991
2
………
………
1991
2
100
N1,2,100
1991
2
18
N1,2,18
1992
1
0
N2,1,0
1992
1
1
N2,1,1
1992
1
………
………
1992
1
………
………
1992
1
100
N2,1,100
1992
1
18
N2,1,18
1992
2
0
N2,2,0
1992
2
1
N2,2,1
………
……
………
………
………
……
………
………
2008
2
100
N18,2,100
2008
2
18
N18,2,18
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Cancer Incidence in Five Continents, volume X: Call for Data
Mortality File
The mortality data should consist of all certified deaths from cancer among residents of the
registration area during the same period as that covered by the incidence data. The mortality
data should be the official cancer mortality data, as obtained from the Vital Statistics
Department or equivalent and based on certificates/death records.
Cancer registries may also have access to individual death certificates/records mentioning
cancer. Mortality data based on such records should NOT be submitted.
Mortality data (where available) will be used in Volume X, as in previous volumes, to
calculate the ratios of mortality to incidence by site.
Scope
National cancer registries are not required to submit national mortality statistics, as these
can be retrieved directly from the WHO database.
The mortality data for sub-national regions covered by a cancer registry should include all
past residents whose underlying cause of death was cancer.
The Mortality File should correspond to the Cancer Cases File with respect to:
• Sub-population (ethnic group, if applicable)
• Registration area
• Time period
• Sex
• Cause of death
• Age-range
File format
Ideally, the file should contain the number of deaths for every combination of:
• Calendar year
• Sex
• Age (single year if possible as in Example 3, or standard 18 age-groups (1=0-4, 2=59, 3=10-14,… 17=80-84, 18=85+) as shown in Example 4. The coding of the age
groups should be appropriately adjusted and documented if there are less then 18 age
groups available.
• All-ages mortality (total number of deaths) can be provided if no breakdown
information by age-group is available
• Cause of death (3 characters of the applicable ICD code: ICD-10 is used in Example 3
and ICD-9 in Example 4)
Each line of the Mortality File should include number of deaths for the combination of
calendar year, sex, age and cause of death, as shown below (Example 3).
Alternatively, the next finest level of detail available should be provided - number of deaths
for the combination of calendar period, sex, 5-year age groups and cause of death, or other
as appropriate.
Data for each sub-population (constituting registry or ethnic group) should be recorded in a
separate file or worksheet.
The codes for sex should be the same as in the Cancer Cases File.
Accompanying information required
• Any coding schemes other than those recommended must be documented in the
Coding File.
• Reference to the source of mortality data must be provided in the questionnaire.
12
Cancer Incidence in Five Continents, volume X: Call for Data
•
Any modification of the official figures must be described.
Example 3:
Example 4:
Year
Sex
Age
unit
Cause of
death
Deaths
Year
Sex
Age
group
Cause of
death
Deaths
1991
1
0
C00
D1,1,0,C00
1991
1
1
140
D1,1,1,140
1991
1
1
C00
D1,1,1,C00
1991
1
2
140
D1,1,2,140
1991
1
2
C00
D1,1,2,C00
1991
1
3
140
D1,1,3,140
1991
1
………
………
………
1991
1
………
………
………
1991
1
100
C00
D1,1,100,C00
1991
1
18
140
D1,1,18,140
1991
2
0
C00
D1,2,0,C00
1991
2
1
140
D1,2,1,140
1991
2
1
C00
D1,2,1,C00
1991
2
2
140
D1,2,2,140
1991
2
………
………
………
1991
2
………
………
………
1991
2
100
C00
D1,2,100,C00
1991
2
18
140
D1,2,18,140
1992
1
0
C01
D2,1,0,C01
1992
1
1
141
D2,1,1,141
1992
1
………
………
………
1992
1
………
………
………
1992
1
100
C01
D2,1,100,C01
1992
1
18
141
D2,1,18,141
1992
2
0
C01
D2,2,0,C01
1992
2
1
141
D2,2,1,141
………
……
………
………
………
………
……
………
………
………
2008
2
100
C97
D18,2,100,C97
2008
2
18
208
D18,2,18, 208
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Cancer Incidence in Five Continents, volume X: Call for Data
Coding File
This file is to be used to supply details of any non standard coding conventions used or to
provide information on any unique codes specific to your registry.
Examples of the possible contents:
• Changes in the registration coverage
• Local definition of incidence date
• Coding of basis of diagnosis that differs from the codes proposed in Table 1
• Coding of ethnic group
• Description of the methodology used to derive population figures in the absence of
published population data
• Any other information useful for processing the submitted dataset
• Any other information useful to evaluation of the results
Questionnaire
The questionnaire is an essential part of the submission.
The information provided in the questionnaire will help the Editorial Board in evaluation of
the submitted datasets.
Selected information from the questionnaire will be tabulated in the printed volume and will
help those using published data to interpret results correctly.
The questionnaire is available on the registries portal and should be completed on-line. The
hard copy of the questionnaire provided in the Annex is only for information. The advantages
of completing the questionnaire on-line are as follows:
• Answers are pre-populated for questions used in previous surveys
• Answers recorded directly into a database, which saves resources and avoids
transcription errors
• A copy of the completed questionnaire will be returned to the registry with an
automatic acknowledgement of receipt
• Monitoring of the status of questionnaire completion
• No paper to archive (but possible, if needed)
Unless otherwise specified, all answers should refer to the target registration period, 20032007.
Introductory text
The questionnaire includes a section for provision of a brief description of the registry. This
should follow the outline below and will be published in the printed volume. The outline
provides possible topics to be included. It is advisable to consult the introductory texts
published in previous volumes of CI5. The objective is to help the reader interpret the
incidence rates during the reference period and possibly any significant changes since
previous publication in CI5.
The length is strictly limited to 350 words and it is not necessary to repeat any information
provided elsewhere in the questionnaire. Any useful complementary details could be
included. Citations should be used where applicable.
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Cancer Incidence in Five Continents, volume X: Call for Data
Outline (350 words maximum, longer contributions will be rejected)
Registration area
•
•
•
Definition of the area covered by population-based registration (country, region, other
administrative division)
Nature of population (urban/rural, ethnic/racial composition, religion etc.)
Comment on any changes in coverage
Cancer care facilities
•
•
•
Availability of diagnostic and treatment services for cancer, number and distribution of
the referral hospitals, number of radiotherapy facilities, etc.
Insurance schemes and coverage
National cancer control plan
Registry structure and methods
•
•
•
•
•
Legal framework for registration, confidentiality, informed consent, encryption, etc.
Administrative framework, funding body, physical and financial support
Number and type of staff
Methods of data collection: active search, passive notification, automated (receiving
pre-coded data)
Quality control procedures: formal studies/evaluations carried out
Interpreting the results
Please consider factors which may influence incidence rates:
• Changes in the area covered, or the population within the area
• Changes in availability of diagnostic and /or treatment services
• Changes in case definition and coding
• Screening programmes for cancer (organised, opportunistic, PSA testing)
• Unusual environmental, occupational exposures
Use of the data
•
•
•
Reporting of incidence, extent of disease, survival
Research use
Planning and evaluation of heath services
To access the questionnaire, please connect to the registries portal on https://cinportal.iarc.fr
using the username and the password of your registry and select the ‘questionnaires’ section.
15
Cancer Incidence in Five Continents, volume X: Call for Data
References
Cancer Incidence in Five Continents
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Data quality and comparability:
4. WHO. International Statistical Classification of Diseases and Related Health Problems (10th
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IARC
internal
report
n°2004/02.
Lyon:
IARC,
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Available
from:
http://www.iacr.com.fr/MPrules_july2004.pdf, accessed on 28 April 2011.
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http://seer.cancer.gov/manuals/2010/SPCSM_2010_maindoc.pdf (page 50)
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Cancer Incidence in Five Continents, volume X: Call for Data
CI5 volume X data call requirements at a glance
This form is not part of the submission but is for use within registries to ensure all criteria for
submission have been met.
Cancer Cases File
Verification of inclusion criteria
Validation
Conversion to ICD-O-3 (if necessary)
Removal of duplicate registrations
Retaining all multiple primaries
Checking mandatory and optional variables
Adhering to the recommended coding
Formatting
Zipping and protecting
Other Data Files
Population File (minimum submission)
Mortality File
Other Information
Coding File with non-standard coding schemes used in any data files
Questionnaire including Introductory Text
Questionnaire completed
Introductory text supplied (maximum 350 words)
Submission through the Registries portal at IARC
https://cinportal.iarc.fr/
Username
Password
Permissions for use of the data
Contact
Cancer Information Section
International Agency for Research on Cancer
150 cours Albert Thomas
69372 Lyon Cedex 08
FRANCE
[email protected]
Deadline for submission: 01 December 2011
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