1. Cancer Registry and Burden of cancer
Hai-Rim Shin
Data Analysis and Interpretation Group

2. Outlines Cancer Registry Cancer Burden
Definition of registry: registration
Types of cancer registries
Essential variables- required
Quality indices: Quality control
Software: CanReg
Use of Cancer Registry and cancer control
Cancer Burden
GLOBOCAN project

3. Cancer Registry : Registration
The office or institution which is responsible for the collection, storage, analysis and interpretation of data on persons with cancer.
Cancer registration
The process of continuing systematic collection of data on the occurrence, characteristics, and outcome of reportable neoplasms with the purpose of helping to assess (prevent) and control the impact of malignant disease in the community.

4. Cancer Registry Types 1. Population based cancer registry (PBCR)
2. Hospital cancer registry
3. Pathology registry

5. Population based Cancer Registry
All cases in a DEFINED population are registered
True (unbiased) profile of cancer in the community
incidence, stage distribution, survival, etc.
Calculation of incidence rates (because population at risk is quantified)
The main interest is for epidemiology and public health

6. Hospital based Cancer Registry
Records all cases of cancer treated in a given hospital
The population from which the cases come is not defined
The main interest is clinical care hospital administration

7. Pathology Tumor Registry
Collects information from one or more laboratories on histologically diagnosed cancers
The population from which the tumour tissue has come is not defined
The information
- has high diagnostic quality
- but is difficult to generalize

8. Data Sources  1. Med Records Dept  2. Outpatient clinic
 3. Pathology lab
 4. Hematology lab
 5. Radiol Oncology
 6. Diagnostic Rad
 7. Health Insurance
 8. Screening
 9. Death certificates
10. Autopsy
11. Others
There are the data sources for cancer cases ascertainment.
This clover mark indicates the available sources to provide cancer cases in Korea

9. Basic information required and variable definitions
Item no.
Item
The person
The tumour
Personal identification 16
Incidence date 3
Name 17
Most valid basis of diagnosis 4
Sex 5
Date of birth or age 20
Topography (site)
Demographic 21
Morphology (histology) 6
Address 22
Behavior 11
Ethnic group 35
Source of information

10. HOSPITAL CANCER REGISTRY Additional variables
Contact details
Admission + Discharge dates
Hospital referred from , to
Physicians (treating, following)
Diagnostic procedures
Extent of disease
Treatment details (first, subsequent)
Outcome (recurrence)
Follow - up

11. Most valid basis of diagnosis of cancer
Non-microscopic
Clinical only
Clinical investigation (including X-ray, ultrasound, etc)
Exploratory surgery/autopsy
Specific biochemical and/ or immunological tests

12. Most valid basis of diagnosis of cancer
Microscopic
Cytology or haematology
Histology of metastasis
Histology of primary
Autopsy with concurrent
or previous histology
Unknown
Death Certificate Only (DCO)
Hepatocellular carcinoma

13. Quality : Quality Control
Quality of Data
The registry data – reliable and of good quality
Should be complete, consistent and accurate
Quality Control
The mechanism by which the quality of data can be assessed
* a formal ongoing programme
* ad hoc survey to assess completeness and consistency of case finding, abstracting, and coding as well as the accuracy of reporting

14. Evaluation of data quality in the cancer registry
Completeness
Comparability
Validity or accuracy
Timeliness

15. Completeness
The extent to which all of the incident cancers occurring in the population are included in the registry database
Coverage

16. Comparability
The system used for classification and coding of neoplasms;
The definition of incidence, i.e. what is defined as a case, and what is the definition of the incidence date;
The distinction between a primary cancer (new case) and an extension, recurrence or metastasis of an existing one (multiple primary);
The recoding of cancers detected in asymptomatic individuals

17. International standards for classification and coding of neoplasm
1. ICD-O-3 (2000, WHO)
Topography: location of the tumour in the body (T code: C16)
Morphology: microscopic appearance and cellular origin of the tumor
(M code: 8000)
Behavior: whether the tumour is malignant, benign, in situ or uncertain (/3)
Grade: the extent of defferentiation of tumour
A standard coding scheme is also provided for recording the basis of diagnosis of cancers
Comparability

18. Date of diagnosis: Incidence date
SEER Program Coding and Staging Manual 2007 (pp 61-64)
ENCR, 1999
Standards recommended for the definitions of incidence
1. Date of first histological or cytological confirmation
2. Date of admission to the hospital
3. Date of first evaluation (outpatient clinic)
4. Date of diagnosis other than 1,2,3
5. Date of death, if no information is available
6. Date of death – at autopsy
Comparability

19. IARC Multiple Primary Rule (2000 and 2004)
Multiple primaries
IARC Multiple Primary Rule (2000 and 2004)
International rules for multiple primary cancers ICD-O-3rd ed IARC Internal Report No /02

20. Incidental diagnosis
Incidental diagnosis refers to the detection of cancer incidentally
1. Screen detected cancers
Aim of screening : to detect cancers that are asymptomatic at an earlier stage
- increasing with prevalent cancers
- tend reduce incidence rates of colon and cervix cancer via the removal of premalignant lesions
2. Autopsy diagnosis ? In Asia
Comparability

21. Validity (accuracy) 1. Re-abstracting and recoding
2. Histological verification
the index of validity: the percentage of cases morphologically verified
3. Death Certificate Only (DCO)
4. Missing information
5. Internal consistency:
IARC, IACR CHECK program

22. Death Certificate Only (DCO) means 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 - DCN).
Office for “Death Certificates” in terms of storage (record keeping)?

23. Timeliness
Rapid reporting of information on cancer cases is another priority
There are no international guidelines for timeliness at present, but
North American agencies have set out specific standards for the relevant registries
SEER: with 22 month of the end of the diagnosis year

24. Data quality and Comparability Criteria CI5 vol IX
Excluded
Complete coverage
Death reporting meet WHO recommendations
%Unk, DCO, Ill-defined site <10%
No abrupt trends, cases
denominators OK
MV% > 80%
(99-100% excluded)
DCO 0.0 %
(DCO:none )
No access to death certificates
Official mortality data not available by cause or poor quality by cause
10% < %Unk, DCO, ill-defined site <20%
75% < MV% < 80%
MV% but C22
MV% but C91-95
No Death Clearance as source of case finding
No official mortality data
No ad hoc study of completeness
DCO, Unk, ill-defined site > 20%
MV% too high (99-100%) or low for selected sites
(overall MV% < 75%)
M/I threshold by site
Implausible incidence rates
Specialized registries e.g. childhood, mesothelioma
Data with <2 years

25. Software for registration
Cancer registries need a tool to input, store, check and analyze their data.
Cancer registration data that are collected and coded in a standard way make possible the production of comparable cancer incidence among various countries. 25

26. CanReg5
The goal of the CanReg5 project is to make available an easy to use and flexible software package to support cancer registries in accomplishing these tasks.
CanReg5 contains modules for:
data entry
quality control
basic analysis of the data
Provides online help
Currently beta version
Responsible Officer: Ervic Morten, DEP 26

27. Multiple Document Interface27

29. Purposes and Uses of Cancer Registration
1 Epidemiological Research
Descriptive Epidemiology
Analytic Epidemiology
2 Health Care Planning and Monitoring
Patient Care
Survival
Screening
Prevention

30. Use of Cancer Registry data
Analyses of cancer registry data
Record linkage studies
Sources of cases for case-control studies
Source of reference rates

31. Analysis of cancer registry data
Geographical variations
Time trends
Analyses by sex and ethnic group
Analysis of other risk factors
occupation
place of birth
civil status
religion

32. Information Cancer Statistics
Patients/Family
Policy makers
/Researchers
Cancer
Statistics
refining
Supports
Calculation
Estimation
Legislation (Act)
Budget (Finance)
Administration
Collaboration
Supports
Technically
Financially
Central CR
Regional CR
Site-spec CR
Insurance info
NSO etc
Roles
Ministry of Health
Ministry of Administration
Ministry of Law
IARC/IACR

33. National Cancer Control Program
: a systemic and comprehensive approach
Treatment
Palliative
Care
Early
Detection
Prevention
Cancer
Control
Program
WHO

34. National Cancer Control Program
: a systemic and comprehensive approach
Early
Detection
Treatment
Cancer
Control
Program
Palliative
Care
Prevention
The cancer registry
an essential part of cancer control program

35. National Cancer Control
WHO, 2002
1/3: Prevention
Anti-smoking campaign
HBV vaccination
1/3: Early detection
Screening
1/3: Palliative care
Our basic principle of cancer control is the same as the WHO and Dr. Boyle’s IARC.
One thirds of all cancers can be controlled through primary prevention,
One thirds can be saved their life through early detection and treatment.
and last one thirds can be managed through palliative care.
With this in mind, Korean government implemented in cancer control strategies.
Add effective distribution of therapeutic resources and research 35

37. The activities in the cancer registry are universal.
NAACCR
ENCR
Asia?
(APOCP)
MECC
South America
Africa
The activities in the cancer registry are universal.

38. Outlines Cancer Registry Cancer Burden
Definition of registry: registration
Types of cancer registries
Essential variables- required
Quality indices: Quality control
Cancer Burden
GLOBOCAN project

39. Burden of Cancer
Incidence, Mortality, Morbidity (Prevalence): by site, age group, sex
Summary measurements: DALY (disability adjusted life year), YLLs (years life lost due to premature death), YLD (years lived with disability), HeaLY (healthy life years lost), etc
Economic burden: Medical cost, non-Medical cost

40. Estimate of the Global Burden of Cancer: The GLOBOCAN project
The aim of the GLOBOCAN project is to provide contemporary estimates of the incidence of, and mortality from the major types of cancer, at national level, for every country in the world.
GLOBOCAN 2008 in Feb 2010
Members of Editorial board:
Jacques Ferlay, Hai-Rim Shin (DEA, IARC)
Max Parkin, Fraddie Bray (Cancer team for GBD)
Coli Mathers (WHO HQ)

41. Estimate fo the Global Burden of Cancer: The GLOBOCAN project
Data sources (1)
Incidence and survival data:
Provided by cancer registries thru the International Association of Cancer Registries (IACR)
Mostly regional.
Not always recent (generally 5 year late): request time to be compiled and published.
Detailed information (site, histology, laterality, grade, stage).

42. Coverage of cancer registration worldwide
% of the population covered (around 2000)
40.0
99.0
19.0
7.1
7.9
When considering data of good quality (included in the latest volume for the Cancer Incidence in Five Continents series), these percentages are even lower: only 8% of the world is covered by “good, reliable” cancer registries.
13.0
82.0
16.5% total

43. Preparing National Incidence Estimates
National incidence data
Mortality data
Regional incidence data
Relative frequency
No data
(Modelling)
(Weighting)
(Frequency)
Average
If there are no data, the country specific rates are those of the corresponding region (calculated from the other countries for which estimates could be made).

44. Data sources (2) Mortality data (number of death from cancer):
National level
Provided by the WHO
Recent and available for long time periods (1950 to 2008).
Limited number of cancers.
Quality can be poor (under-reporting, coverage- not full, high percentage of ill-defined causes of deaths etc.)

45. Mortality data (WHO databank)
% of the population covered (around 2005)
98.0
100.0
100
9.0
13.8*
95.0
The coverage is better for mortality. However, the detail and the quality of the data (accuracy of the recorded cause of death and the completeness of registration vary substantially).
Note that there is quit no mortality information for Africa except in South Africa and Egypt (13% of total African pop)
76.5
33% total
*Egypt and South-African Republic

46. Preparing National Mortality Estimates
National mortality data
Regional mortality data
No data
(Weighting)
Incidence+
Survival
For most of the countries in developing areas, there is no information on mortality. Mortality was estimated from incidence using survival data

47. Accessible thru the Internet or using a Windows-based PC software
The results are presented for 170 countries of the world, plus build-in areas (six WHO regions, more and less developed countries and the world)
Data available for 27 major cancers, for men and women, and for 5 age groups: 0-14,15-44,45-54,55-64,65+
Accessible thru the Internet or using a Windows-based PC software
If there are no data, the country specific rates are those of the corresponding region (calculated from the other countries for which estimates could be made).

48. New cancer cases and deaths, World 2002
(10.8 million cases/6.7 million deaths)
Males
5.8 million cases
3.8 million deaths
Females
5.0 million cases
2.9 million deaths
Lung (1.35/1.18)
Breast (1.15/0.41)
Colon/Rectum (1.0/0.53)
Stomach (0.93/0.70)
Prostate (0.68/0.22)
Liver (0.63/0.60)
Cervix uteri (0.49/0.28)
Oesophagus (0.41/0.34)
Bladder (0.35/0.14)
Non-Hodgkin lymphoma (0.30/0.16)
Leukaemia (0.28/0.20)
Oral cavity (0.27/0.12)
Pancreas (0.23/0.22)
Kidney (0.21/0.11)
Ovary (0.20/0.12)
Incidence
Mortality
(Thousands)

49. 965,000 cases in 2002

50. 1.15 million cases in 2002

51. Islamic Republic of Iran
Republic of Korea (South)
2008
Iran
South Korea
Male
Female
Population
37.3M
36.0M
23.8M
24.3M
cases
38,514
26,437
38,254
73,057
Deaths
29,906
18,068
42,358
25,511

52. Islamic Republic of Iran
Republic of Korea (South)
2008
Iran
South Korea
Male
Female
Population
37.3M
36.0M
23.8M
24.3M
cases
38,514
(129.6)
26,437
(89.9)
38,254
(293.6)
73,057
(207.1)
Deaths
29,906
(101.1)
18,068
(63.5)
42,358
(146.8)
25,511
(63.7)

53. Burden of cancer Incidence, Mortality, Prevalence, Survival
Causes of cancer
Tobacco Smoking
Alcohol Drinking
Infectious Agents
Occupation
Environment
Radiation
Diet
Reproductive factors
Obesity
Physical inactivity
Genetic
HRT/Oral Contraceptive
Population Attributable Fraction
Cancer Control (planning/monitoring/Evaluation)

54. The burden of cancer is rising markedly worldwide with estimates indicating that there will be double the current number of new cases per year by The majority of the increase is expected in low- and middle-income countries where health services are least able to meet the impending challenge.

55. References (cancer registry and control)
1. Parkin, D. M. The evolution of the population-based cancer registry. Nat Rev Cancer, 6: , 2006.
2. Curado, M. P., Edwards, B., Shin, H. R., Storm, H., Feray, J., Heanue, M., and Boyle, P. Cancer Incidence in Five Continents. IARC Scientific Publications No Lyon: IARC, 2007.
3. Bray, F., and Parkin, D. M. Evaluation of data quality in the cancer registry: principles and methods. Part I: comparability, validity and timeliness. Eur J Cancer, 45: , 2009.
4. Parkin, D. M., and Bray, F. Evaluation of data quality in the cancer registry: principles and methods Part II. Completeness. Eur J Cancer, 45: , 2009.
5. Curado, M. P., Voti, L., and Sortino-Rachou, A. M. Cancer registration data and quality indicators in low and middle income countries: their interpretation and potential use for the improvement of cancer care. Cancer Causes Control, 20: 751-6, 2009.

56. References (cancer registry and control)
6. Das, B., Clegg, L. X., Feuer, E. J., and Pickle, L. W. A new method to evaluate the completeness of case ascertainment by a cancer registry. Cancer Causes Control, 19: , 2008.
7. Fallah, M., and Kharazmi, E. Global cancer incidences are substantially under-estimated due to under-ascertainment in elderly cancer cases. Asian Pac J Cancer Prev, 10: 223-6, 2009.
8. Wingo, P. A., Howe, H. L., Thun, M. J., Ballard-Barbash, R., Ward, E., Brown, M. L., Sylvester, J., Friedell, G. H., Alley, L., Rowland, J. H., and Edwards, B. K. A national framework for cancer surveillance in the United States. Cancer Causes Control, 16: , 2005.
9. Parkin, D. M. The role of cancer registries in cancer control. Int J Clin Oncol, 13: , 2008.
10. Moore, M. A., Shin, H. R., Curado, M. P., and Sobue, T. Establishment of an Asian Cancer Registry Network - problems and perspectives. Asian Pac J Cancer Prev, 9: , 2008.

57. your time and attention! Questions and Comments
Thank you for
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Questions and Comments