IARC, Cancer Registries &
Regional Hubs for Cancer Registration in LMIC
Freddie Bray  International Agency on Research on Cancer
Freddie Bray  International Agency on Research on Cancer
Sleman
02 May 2013
IARC: an international
effort to combat cancer
The International Agency for Research
on Cancer (IARC), the specialized
cancer Agency of WHO was
established in May 1965 following an
initiative by French leading scientists
supported by General de Gaulle, who
proposed the idea that advanced
nations could unite to curb a growing
global health threat: cancer.
IARC’s 22 Participating States
Switzerland 1990
Germany 1965
Australia 1965
Sweden 1979
Austria 2008
Russian Federation 1965
United Kingdom 1965
Belgium 1970
Canada 1982
Rep. of Korea 2006
IARC Governance
Netherlands 1967
Denmark 1990
Governing Council
Scientific Council
Norway 1987
Spain 2003
United States 1965
Japan 1972
Finland 1986
Italy 1965
France 1965
Ireland 2007
Turkey 2011
India 2006
Key Principles
1. Primary role is
research
2. Promote collaboration
3. Interdisciplinary
research
4. Worldwide mandate
5. Education & Training
Priority areas
1. Describing the global
cancer burden
2. IARC Monographs
3. Cancer aetiology
4. Mechanisms of
carcinogenesis
5. Cancer prevention
6. Education & training
IARC Organizational Structure
Courses in cancer registration: 2010-13
•
•
•
•
•
•
•
•
•
•
•
•
•
Annual IARC Summer School Module 2010-2013 (Lyon)
Ecuador (April 2010)
Trinidad and Tobago (April 2010)
Cape Town (Sept 2010)
Mumbai (March 2011)
Cairo (Nov 2011) in French
Mumbai (March 2012)
Cali (Oct 2012) in Spanish
Abuja (Nov 2012)
Bangkok (March 2013)
Jakarta (May 2013)
Izmir (July 2013)
Chennai (Sept 2013)
Representation of Surveillance activities
Section of Cancer Information
Global Indicators
- Collection
- Analysis
- Dissemination

Registry Support
Registry
Collaboration

• Routine / ad hoc publications
Descriptive
Epidemiologic
Research
• ‘Cutting-edge’

Section of Cancer Information:
Global Surveillance
• Dissemination of Global Indicators
 incidence  mortality  survival  prevalence  DALYs
• Descriptive epidemiological research
 comprehensive  collaborative  methods-driven  cutting-edge
• Close cooperation & support for cancer registries in
LMIC - IARC Regional Hubs for Cancer Registration
 technical support  training  research  advocacy  networking
2012
Lancet 2012;380(9856):1840-50.
Lancet Oncology 2012;13(8):790-801.
Int J Cancer. 20;132(5):1133-45
The global burden of cancer
• 12.7m new cases in 2008, 56% in less developed regions
• 21.3m estimated for 2030*, 60% in less developed regions
*assuming no change in risk from 2008
More developed
5.6m cancer
cases 2008
Less developed
7.1m cancer
cases 2008
35% increase
by 2030
21.3m cancer
cases 2030
80% increase
by 2030
Ranking of age-standardised rates of mortality for cancer
vs. cardiovascular disease + diabetes (combined) &
chronic respiratory disease. Ages 30-70, both sexes.
Source: WHO Global Health Observatory Data Repository
A world in transition: (i) trends in HDI 19702011 in selected countries ; (ii) traditional
view of developed vs. developing; (iii) four
levels of HDI circa 2007;.
(ii)
(i) HDI trends 1970-2011
(Source: UNDP 2010)
1970
Norway
Sweden
Qatar
Uruguay
Russia
Colombia
China
circa 1970
Morocco
circa 2011
Kenya
Uganda
Congo
(Dem Rep)
2011
(iii)
0
Burden
• Of 57 million deaths in 2008, 2/3 due
to NCDs.
• Cancer will be an increasingly
important cause of morbidity/mortality
in next few decades in all regions.
Population-Based Cancer
Registries
• Current capacities for NCD
surveillance are inadequate in many
countries and urgently require
strengthening.
• Cancer morbidity is essential for
planning & monitoring cancer control
initiatives.
• PBCR are core components of national
programmes - provide means to plan,
monitor and evaluate the impact of
specific interventions in targeted
populations.
 IARC Regional Hubs for Cancer Registration
Support to Registries –
 technical support  training  research  advocacy  networking
Global Indicators
- Collection
- Analysis
- Dissemination

Registry Support
Registry
Collaboration

• Routine / ad hoc publications
Descriptive
Epidemiologic
Research
• ‘Cutting-edge’

Process of Cancer Registry in Indonesia
2012-2014 : Expanding to Urban-Rural Areas
2012 : PBCR in Jakarta 2008-2012
2011 : Data submit to CI5 Volume X and IICC-3
2010 : Population-based Cancer Registry 2005-2007 in 594 Health Care
Facilities (152 Hospitals, 2 Clinics, 345 Primary Health Care, 7 Private Path
Lab, 88 Clinical Lab)
2006 : Hospital-based Cancer Registry in Jakarta as a Model (40 hospitals) 
Population-based Cancer Registry
1987 : Pathological-based Cancer Registry in
13 Centers Diagnostic of Pathology
1970 : Population-based Cancer Registry in
Semarang, Central Java
Action Plan for the Global Strategy for the
Prevention and Control of NCDs 2013-20
• Recommendations for a set of voluntary global targets for the
prevention and control of NCDs.
– 25% reduction in premature NCD mortality
• A comprehensive global monitoring framework to monitor
trends and assess progress made in the implementation of
national strategies & plans on NCDs
– Cancer Incidence (collected by population-based cancer registries)
National mortality series: availability
Cancer Incidence in Five Continents
% population covered by cancer registries in Vol. IX 1998-2002
(number of registries/number of countries providing data)
32.5
(100/29)
83.0
(54/2)
4.0
(44/15)
1.1
(5/5)
5.5
(11/7)
80.5
(11/2)
11.6 total
(225/60)
Inclusion of sub-Saharan African cancer
registries in CI5 I-IX
Country
Registry
CI5 volumes
1
Mali
Bamako
Mozambique
Lourenço Marques
x
Nigeria
Ibadan
x
Senegal
Dakar
South Africa
Jo’burg Bantu
2
x
3
4
5
6
7
8
x
x
x
x
x
x
Natal African
x
Natal Indian
x
The Gambia
x
Uganda
Kampala
Zimbabwe
9
x
x
x
x
x
Harare African
x
x
x
Harare European
x
What is cancer registration?
•
Cancer Registry
•
•
Cancer registration
•
•
The office or institution which is responsible for the collection storage,
analysis and interpretation of data on persons with cancer
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
Cancer Registries – characteristics by development
Key areas
High Income
Low/Middle Income
Data Collection
Passive
Active + Passive
Health information
system
Computerised
Paper-based
Access to health
services
Excellent
Moderate to Poor
Case confirmation
High Microscopic
Verification
Moderate
Record Linkage
Possible
Difficult
Follow up
Good
Poor
Death registration/
certification
Excellent
Poor
Planning for a PBCR
• Clear definition of the catchment population
• Size of population and number of cases
– Decide on optimal size of the population covered by the registry
• Physical location of the registry
• Legal aspects and confidentiality
• Advisory committee
– Seek cooperation / support of medical community.
– Representatives of funder(s), sources and users of data
• Personnel
– Leadership of PBCR Director
– Necessity of adequate staffing, expertise and training
• Equipment (IT - linkage of sources) / office space
• Financing
– Dependant on size of area, data items collected, different sources etc.
The Global Initiative for
Cancer Registry Development
• To develop capacity in LMICs to produce reliable, highquality information on the burden of cancer – a key
response to the UN Political Declaration on NCD in
Sept 2011.
• It proposed the establishment of a global network of
regional hubs to provide support, training and
infrastructure to local networks of cancer registries
• GICR is an IARC initiative, backed by a number of
major international partners
• Fundraising program being developed with UICC with a
minimum target $5m over 5 years
http://gicr.iarc.fr/
The Global Initiative for
Cancer Registry Development
• First IARC Regional hub for the Asia region
established at the Tata Memorial Centre in Mumbai
(India) in 2011. Inaugurated October 2012.
• Second hub being launched in 2013 in Izmir
(Turkey) [with support from Centre for Global
Health, NCI, USA and the Cancer Control
Department, Ministry of Health of Turkey]
• African Cancer Registry Network (AFCRN)
launched in 2012 [collaboration led by Dr Max
Parkin, INCTR with support from ACS, USA]
• Next steps:
• Establishment of Hub in Latin-America and
Caribbean with local partners (RINC)
• Hub Executive Group
http://gicr.iarc.fr/
Technical support
Training
Research
Advocacy & Networking
Availability of Cancer Registries Worldwide –
last 10 years
Enhancing Cancer Registration via Hubs:
the regional perspective
PaBCR=Pathology-Based Registry
CI5 inclusion
PBCR
HBCR or
PaBCR
CR not yet
established
A. No data
B. Potential to become
population-based
Current level attained
C. Potential to be
of CI5 standard
D. CI5
Registry
Enhancing Cancer Registration via Hubs:
the regional perspective
PaBCR=Pathology-Based Registry
CI5 inclusion
PBCR
HBCR or
PaBCR
CR not yet
established
A. No data
B. Potential to become
population-based
Current level attained
C. Potential to be
of CI5 standard
D. CI5
Registry
Enhanced level via Hub support
Data availability – cancer incidence
Support for Registration
• Hub as 1st point of call
– Initial response to all queries.
Training
Support
• Support and advice re:
– CanReg5
– registration methods, coding
and classification
– data quality, statistical analyses
and presentation
Research
Networking
• Ad hoc consultancy, advice
and advocacy, direct support
– including site visits
– Support identification and
delivery of collaborative
agreements with registries.
Activities
2012-13
Courses:
• Mumbai (2012)
• Bangkok (Mar 2013)
• Jakarta (May 2013)
• Chennai (Sept 2013)
Data Quality / Costing:
• India / Thailand
First Registry Reports:
• Indonesia
• Mongolia
• Sri Lanka
Cancer in Asia 2003-7
CanReg5 Installation
& Assistance
Training
Research
Direct
Support
Advocacy
Networking
Collaborative
Agreements:
• Indonesia (2012)
• Mongolia (2012)
• Sri Lanka (2012)
Site visits:
• Nepal (2012)
• Bhutan (2013)
• Thailand (2013)
Indonesia (2013)
• Cambodia (2013)
• Vietnam (2013)
• Bangladesh (2013)
Population Based Cancer Registries - S&E Asia
Potential
Established
•
•
•
•
•
•
•
•
•
•
China
India
Japan
South Korea
Singapore
Thailand
Philippines
Vietnam
Pakistan
Malaysia
•
•
•
•
•
•
•
•
•
Indonesia
Mongolia
Sri Lanka
Bangladesh
Bhutan
Cambodia
Nepal
Myanmar
Laos
Population Based Cancer Registries - Progress
Mongolia
• HBCR since 1980
• Part of NCCP
• HBCR since 1960
• Part of NCCP
• HBCR since 2003
• No NCCP
• PBCR in Colombo
(2.6 million)
• National PBCR
• PBCR in Kathmandu
Valley
• More staff (registrars)
•
•
•
•
•
•
Needs
History
Nepal
Aim
Sri Lanka
• CanReg5
• Quality evaluation
• Analysis / use of data
(2.5 million)
(<2 million)
Staff for active finding
Commitment to PBCR
CanReg5
Quality evaluation
Analysis / use of data
Training
• HBCR to function
• Commitment to PBCR
Urban and Rural Populations
Population (in thousands) : 2010
Geography
Rural
Urban
Total
239,600
(100%)
Indonesia
110,965 128,634
(46%)
(54%)
Sri Lanka
16,614
(85%)
2962
(15%)
19,576
(100%)
Nepal
24,451
(82%)
5,447
(18%)
29,898
(100%)
Thailand
43,007
(66%)
22,118
(34%)
65,125
(100%)
China
744,282 607,230 13,515,12
(55%)
(45%)
(100%)
Source : http://esa.un.org/unup/p2k0data.asp
•
50%-80% of the
population of
developing
countries reside in
rural areas.
• A realistic estimate
of the cancer
burden is therefore
possible only if rural
cancer incidence is
documented.
Cancer incidence in urban and rural India
Site of Cancer South Rural South Urban West Rural West Urban
Dindugil
Chennai
Barshi
Mumbai
2003-06
2003-05
2004-05
2005
Cervix
22.1
22.0
22.8
12.9
Breast
10.9
32.2
9.4
30.3
Ovary
3.3
5.6
3.8
6.9
Mouth
2.8
4.9
0.4
3.6
Stomach
2.5
5.3
0.5
2.4
Esophagus
1.8
4.6
4.0
3.6
Large bowel
1.4
4.4
1.6
5.0
Leukaemia
1.5
3.7
1.3
3.1
Thyroid
1.1
3.0
<0.1
1.3
Brain
1.0
2.1
1.1
2.4
All Sites
62.6
118
59.9
102.3
• Jakarta Cancer Registry
(urban population-based)
• Sleman Cancer Registry
(rural population-based)
Challenges and opportunities for
future cancer registration
• Increase coverage
and quality in areas
of the world
currently
underrepresented
• Prioritize government
resources to cancer
registration as an integral part
of cancer control