Cancer registration

and its role in

cancer epidemiology and
cancer control

Freddie Bray
Deputy Head, Section of Cancer Information
IARC

Dharmais Cancer Hospital · Jakarta · November 2010

 Content
• Global cancer burden 2008 and 2030
• Population-Based Cancer Registries (PBCRs)
• Key characteristics
• vs. hospital or pathology-based registries
• Role of PBCRs:
• Epidemiology
• elucidating the causes of cancer
• Cancer control
• planning national cancer control programmes
• monitoring national cancer control programmes
• evaluating national cancer control programmes
• Availability and quality of PBCRs
• Indonesia
Global cancer burden
2008 and 2030
Cancer registration – a priority for cancer
research, prevention and control
• UICC World Cancer Declaration - second
target for 2020
• The measurement of the global cancer burden and the impact of
cancer control interventions will have improved significantly

• WHO 2008-2013 Action Plan

Global Strategy for the Prevention and Control of Non-
communicable Diseases
• Objective 6: To monitor non-communicable diseases and their
determinants and evaluate progress at the national, regional and
global levels
 The Global Burden of Cancer
In 2008, best estimates:
• 12.7 million new cancer cases
• 7.6 million cancer deaths
• 56% of new cancer cases and 63% of
deaths in developing regions of the
world
Developed vs. Developing

High: 0.8 ≤ HDI <1; Low/Medium: 0.3 ≤ HDI < 0.8 1985
 Human Development Index

High: 0.8 ≤ HDI <1; Medium: 0.5 ≤ HDI < 0.8; Low: 0.3 ≤ HDI < 0.5 2007
IARC and American Cancer Society
Female breast cancer
IARC and American Cancer Society
Jha, 2009
Colon cancer, males
Stomach cancer, males
Source: U.N. Population Division 2006
Population ageing and growth by world region 2002-2050
 Global impact of cancer burden 2030*

• Approx. 21.4 million new cases will be

diagnosed in 2030
• Up 69% from 12.7 million in 2008
• Approx. 13.2 million deaths from cancer will
occur in 2030
• Up 72% from 7.6 million in 2008

* Assuming rates in 2008 do not change.

National impact of cancer burden 2030*
*assuming rates in 2008 do not change

Indonesia: 535 000 cancer cases (est. 292 000 cases in 2008)

Japan: 787 000 cancer cases in 2030

China 4 867 000 cancer cases in 2030

Trends
A steadily increasing proportion
of elderly people in the world will
result in approximately a 50%
increase in new cancer cases over
the next 20 years.
If current smoking levels and the
adoption of unhealthy lifestyle
persist the increase will be even
greater

WHO, 2005
 Projected deaths by cause and income, 2004 to 2030

30
Intentional injuries
Other unintentional
25
Road traffic accidents
Deaths (millions)

Other NCD
20

Cancers
15

10 CVD

Mat//peri/nutritional
5
Other infectious
HIV, TB, malaria
0
2004 2015 2030 2004 2015 2030 2004 2015 2030
High income Middle income Low income

WHO GBD 2004

Population-Based
Cancer Registries
 What is cancer registration?
• Cancer Registry
• 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 and control the impact of
malignant disease in the community.
• Population-Based Cancer Registries (PBCRs)
• Collect information on all new cases of cancer in a defined
population
• The population covered is usually that of a geographic area
• The main interest is for epidemiology and public health
 What is cancer registration?
• Population-Based Cancer Registries

• 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

• if population from which cases come (“population at risk”) is known
- true picture of the difference in risk between population or groups
 Other types of registries
• Pathology-Based Cancer
Registries
• Collect information from
one or more laboratories
on histologically-diagnosed
cancers
• The population from
which the tumour
tissue has come is not
defined
• Information is of high
diagnostic quality
- but is difficult to
generalize
• Hospital-Based Cancer
Registries
• Records all cases of cancer
treated in a given hospital
• The population from
which the cases come is
not defined
• The purpose is to serve the
needs of the hospital
administration, the
hospital's cancer programme
• May not be
representative of all
cancer cases occurring in
the area
 Cancer registration methodology
• Clear definition of the catchment population
• Distinguish residents living within the area and those who
come from outside
• Availability of reliable population denominators
• Generally available medical care and ready access to
medical facilities
• Great majority will come into contact with the health care
system at some point in their illness
• Easy access to case-finding sources
• Hospitals, pathology departments death certificates etc.
 Difficulties in Low/Medium
resource countries
• Lack of resources
• Lack of appropriately-trained staff
• Lack of basic health facilities
• Lack of proper denominators
• Identity of individuals
• Lack of follow-up
 Making counting count: cancer registries as
a basis for cancer prevention and control
1) Epidemiology
• Generating hypotheses of aetiology – geographic and
temporal variations in cancer incidence
• Understanding aetiology and evaluating interventions
- case identification, research endpoints e.g. in
cohort studies
2) Cancer control programmes
• Planning - estimates of cancer burden, targeting
public health interventions
• Evaluating – temporal variations in incidence, survival
and mortality
Role of Population-based
Cancer Registries –
Epidemiology
• Descriptive studies
 Cancer Incidence in Five Continents
Vol 1 (1966) Introduction
“In the development of knowledge about the cause of a
disease, the first and most difficult stage is the search
for clues on which hypotheses can be based…one of
the most rewarding [avenues] is likely to be that
which leads to a comparison of the frequency with
which the disease occurs in different communities in
different areas and at different times”
 Highest national age standardised
rates – selected sites
Cancer Country Est. national Est. world avge
rate rate
Lip, oral Papua New 24.0 3.9
Guinea
Liver Mongolia 94.4 10.8

Kidney Czech Republic 16.2 3.9

Ovary Latvia 14.6 3.3

Thyroid Rep. of Korea 35.4 3.1

NHL Israel 16.6 5.1

 Cancer Incidence in Five Continents: Vol 1
(1966) Introduction
Reliable cancer registries:
• Those able to amass information (diagnostic and
personal) on virtually all cases of cancer among
patients genuinely resident within a defined catchment
area during a prescribed period of time;
• able to supplement this with death certificate data for
patients not seen in hospital
• having an adequate system for eliminating duplicate
entries for the same person
• and good population data - by sex and by 5-year age
groups and, if relevant, by race/language
Cancer Incidence in Five Continents
% population covered by cancer registries in Vol. IX
(number of registries/number of countries providing data)

83.0 32.5
(100/29)
(54/2)
4.0
(44/15)
1.1
(5/5)
5.5
(11/7)
80.5
(11/2)
11.6 total
(225/60)
Geographic Distribution of Chronic HBV Infection

HBsAg Prevalence
8% - High
2-7% - Intermediate
<2% - Low
Prevalence of cervical HPV in sexually active women, 15-59 yrs
IARC Multi-centre HPV Prevalence Survey, 1995-2009
0 5 10 15 20 25 30 35 40 45 50 55

Guinea* 833
Mongolia* 999
Nigeria 933
China, Shenzhen* 534
Argentina 908
India* 1940
China, Shenyang* 685
Poland* 834
Colombia 1981
China, Shanxi* 671
Georgia 1309
Chile 971
Mexico 1340
Korea 870
Vietnam, Ho Chi Minh 918
Italy, Turin* 1013
Nepal* 932
Thailand, Lampang 1024
Iran* 825
Algeria* 761
Netherlands 3299
Thailand, Songkla 716 hpv 16 or 18
Pakistan* 911 other high-risk type
Spain 908
Vietnam, Hanoi 1007 low-risk type only

* Carried out in the last 5 years

Beral, 1974
Peto J (2001) Nature 411:290
 Requirements for the Japan-Hawaii
migrant studies
• Reliable recording of cancer cases in Osaka & Hawaii
• Accurate population information in both populations
• Comparable coding criteria to define cancer and to
categorise cancer sites in the two populations
• Comparable recording and classification standards
over time
• Reliable recording of ethnicity in Hawaii among cancer
patients and within the population
Role of Population-based
Cancer Registries –
Epidemiology
• Studies of cause
 How can this information be used?

For epidemiology:
• Provide starting points for aetiological
investigations
• Source of cases for case-control studies
• Source of endpoints for cohort studies
• Intervention studies
• Data linkage studies
Gambia Hepatitis Intervention Study
• HBV vaccination trial begun in 1986 to evaluate
the impact of the vaccine on chronic liver
disease and liver cancer
• Total of 120,000 children (60,000 vaccinated)
followed to the age of 35 years
• Collaborative study between:
• International Agency for Research on Cancer
(WHO)
• The Gambia Government
• Medical Research Council (UK)
Gambian National Cancer Registry
(led by Ebrima Bah, IARC)
• The only national, population-based cancer
registry in Africa
• Liver cancer: most common cancer in men,
second most common in women
• ASR men: 33 per 100,000
• ASR women: 15 per 100,000
• Linkage of cases of liver cancer from the
National Cancer Registry to the cohort
 Impact of Hepatitis B vaccination on liver
cancer incidence: Taiwan
• Vaccination for infants born to HBsAg carriers during 1984-1986
• Vaccination extended for all infants aged <12 months in 1986,
1-4 year old infants in 1987
• Vaccination extended to 5-9 year old infants during 1988-1990,
10-19 years 1989-91 and to adults 20 years and above during 1990-1993
• 64 liver cancers among vaccinated subjects in 377 709 304 Pyrs Vs. 444
cancers among unvaccinated subjects in 78496 406 Pyrs during 1983-2004
• 69% reduction in liver cancer incidence among vaccinated cohort
• All liver cancer cases diagnosed between 1983-2004 were identified
through linkage with Taiwan National population based cancer registry
• Clinical details (HBsAg, HCV serostatus, fetoprotein levels, HBV
immunization history, treatment etc.) were obtained from the Taiwan
Hepatoma Study Group Registry System

Chang et al., JNCI. 2009;101:1348-1355

 Impact of routine EPI on chronic
HBV infection in The Gambia

Age HBsAg- HBsAg+ Percentage Total

1.0-4.9 1,920 1 0.05 1,921

5.0-9.9 1,586 5 0.31 1,591
10.0-14.9 815 10 1.21 825
15.0-18.5 273 3 1.09 276
Total 4,594 19 0.41 4,613

Hall AJ, Peto T et al., unpublished

 Cluster-randomized trial
of HPV screening
approaches in India

Hazard ratios (HR) of cervical cancer deaths rates

Study group Rate/100 000 HR (95% CI)

Control 25.8 1.00

HPV 12.7 0.52 (0.33-0.83)

Cytology 21.5 0.89 (0.62-1.27)

VIA 20.9 0.86 (0.60-1.25)

CI: Confidence interval

Supported by the Bill & Melinda Gates Foundation through the ACCP
Role of Population-based
Cancer Registries –
Cancer Control
 How can this information be used?

For cancer control plans:

• Public health surveillance and priority
planning
• Predictions of future burden
Incidence and mortality estimates 2008,
Indonesia
Monitoring screening
programmes
CONCORD Study – Age-standardised five year survival for cases
diagnosed 1990-94: colorectal and female breast cancer
GLOBOCAN 2008: Incidence, methods of estimation

National Incidence data (62 of 185 countries, 34%)

Regional incidence (+ mortality) and national mortality (52, 29%)
Regional incidence data only (23, 13%)
Frequency data (13, 7%)
No data (32, 18%)
GLOBOCAN 2008: Mortality, methods of estimation

National mortality data (65 of 185 countries, 36%)

Sample mortality data (31, 17%)
No data - incidence and survival (86, 47%)
 Data availability in GLOBOCAN 2008
South-Eastern Asia
Incidence Mortality
Brunei National incidence National mortality
Cambodia Frequency data No data
Indonesia No data No data
Lao No data No data
Malaysia Regional CR data No data
Myanmar No data No data
Philippines Regional CR data Sample mortality data
Singapore National Incidence National mortality
Thailand Regional CR data No data
Viet Nam Regional CR data Sample mortality
 INDONESIA

Incidence
The cancer profile in Indonesia was estimated using 5 datasets:
1.Simple mean of Singapore (Malay), Malaysia (Penang and Sarawak) “All sites but
skin’ rates (1998-2002), were partitioned using sex- site –age specific proportions
obtained from the pooling of the data from 32 Hospitals in Jakarta (2005-2007).
2.Singapore, Malay rates (1998-2002).
3.Malaysia, Penang rates (1998-2002).
4.Malaysia, Sarawak rates (1998-2002).
5.Estimated incidence rates from Papua New Guinea in 2008.
Incidence and mortality estimates 2008,
Indonesia