freddie bray international agency on research on cancer iarc, cancer registries & regional hubs...
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Freddie Bray International Agency on Research on Cancer
IARC, Cancer Registries & Regional Hubs for Cancer Registration in LMIC
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
United States 1965
Australia 1965
Japan 1972
Belgium 1970
Spain 2003
France 1965
Italy 1965
Germany 1965
United Kingdom 1965
Denmark 1990
Norway 1987
Sweden 1979
Switzerland 1990
Netherlands 1967
Canada 1982
Finland 1986
Russian Federation 1965
Ireland 2007
India 2006
Rep. of Korea 2006
Austria 2008
IARC Governance
Governing CouncilScientific Council
Turkey 2011
Key Principles Priority areas
1. Describing the global cancer burden
2. IARC Monographs3. Cancer aetiology4. Mechanisms of
carcinogenesis5. Cancer prevention6. Education & training
1. Primary role is research
2. Promote collaboration
3. Interdisciplinary research
4. Worldwide mandate
5. 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)
Global Indicators- Collection - Analysis - Dissemination
• Routine / ad hoc publications
Registry SupportRegistry Collaboration
Descriptive Epidemiologic Research • ‘Cutting-edge’
Representation of Surveillance activities Section of Cancer Information
• 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
Section of Cancer Information:Global Surveillance
2012
Lancet Oncology 2012;13(8):790-801.
Lancet 2012;380(9856):1840-50.
Int J Cancer. 20;132(5):1133-45
*assuming no change in risk from 2008
5.6m cancer cases 2008
21.3m cancer cases 2030
80% increase by 2030
7.1m cancer cases 2008
35% increase by 2030
More developed Less developed
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
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
0
A world in transition: (i) trends in HDI 1970-2011 in selected countries ; (ii) traditional view of developed vs. developing; (iii) four levels of HDI circa 2007;.
circa 1970
circa 2011
NorwaySweden
QatarUruguayRussiaColombiaChina
Morocco
Uganda
Kenya
Congo (Dem Rep)
2011
HDI trends 1970-2011 (Source: UNDP 2010)
1970
(ii)
(i)
(iii)
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.
Global Indicators- Collection - Analysis - Dissemination
• Routine / ad hoc publications
Registry SupportRegistry Collaboration
Descriptive Epidemiologic Research • ‘Cutting-edge’
Support to Registries – IARC Regional Hubs for Cancer
Registration technical support training research advocacy networking
Process of Cancer Registry in Indonesia
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
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)
2011 : Data submit to CI5 Volume X and IICC-3
2012 : PBCR in Jakarta 2008-2012
2012-2014 : Expanding to Urban-Rural Areas
• 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)
Action Plan for the Global Strategy for the Prevention and Control of NCDs 2013-20
National mortality series: availability
1.1(5/5)
5.5(11/7)
80.5(11/2)
4.0(44/15)
83.0(54/2)
32.5(100/29)
11.6 total(225/60)
Cancer Incidence in Five Continents% population covered by cancer registries in Vol. IX
1998-2002(number of registries/number of countries providing
data)
Inclusion of sub-Saharan African cancer registries in CI5 I-IX
Country Registry CI5 volumes
1 2 3 4 5 6 7 8 9
Mali Bamako x x x
Mozambique Lourenço Marques x
Nigeria Ibadan x x x
Senegal Dakar x
South Africa Jo’burg Bantu x
Natal African x
Natal Indian x
The Gambia x x
Uganda Kampala x x x x
Zimbabwe Harare African x x x
Harare European x
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
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
Cancer Registries – characteristics by development
• 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.
Planning for a PBCR
The Global Initiative for Cancer Registry Development
• To develop capacity in LMICs to produce reliable, high-quality 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/
• 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
The Global Initiative for Cancer Registry Development
http://gicr.iarc.fr/
Technical support Training Research Advocacy & Networking
Availability of Cancer Registries Worldwide – last 10 years
CI5 inclusion
PBCR
HBCR orPaBCR
CR not yetestablished
B. Potential to become population-
based
C. Potential to be of CI5 standard
D. CI5 Registry
Enhancing Cancer Registration via Hubs:
the regional perspective PaBCR=Pathology-Based Registry
A. No data
Current level attained
CI5 inclusion
PBCR
HBCR orPaBCR
CR not yetestablished
A. No data
B. Potential to become population-
based
C. Potential to be of CI5 standard
D. CI5 Registry
Enhanced level via Hub support
Enhancing Cancer Registration via Hubs:
the regional perspective PaBCR=Pathology-Based Registry
Current level attained
Data availability – cancer incidence
Support for Registration
Training Support
Research Networking
• Hub as 1st point of call– Initial response to all
queries.• Support and advice re:
– CanReg5– registration methods,
coding and classification– data quality, statistical
analyses and presentation
• Ad hoc consultancy, advice and advocacy, direct support– including site visits– Support identification
and delivery of collaborative agreements with registries.
Research
Training
AdvocacyNetworking
Direct Support
CanReg5 Installation & Assistance
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)
Courses:• Mumbai (2012)• Bangkok (Mar
2013)• Jakarta (May
2013)• Chennai (Sept
2013)Data Quality / Costing:• India / ThailandFirst Registry Reports:• Indonesia• Mongolia• Sri LankaCancer in Asia 2003-7
Activities
2012-13
• China• India• Japan• South Korea• Singapore • Thailand• Philippines• Vietnam• Pakistan• Malaysia
Population Based Cancer Registries - S&E Asia
• Indonesia• Mongolia• Sri Lanka• Banglades
h• Bhutan• Cambodia• Nepal• Myanmar• Laos
Established Potential
• HBCR since 1980• Part of NCCP
• PBCR in Colombo(2.6 million)
• More staff (registrars)
• CanReg5• Quality evaluation• Analysis / use of
data
Population Based Cancer Registries - Progress
• HBCR since 1960• Part of NCCP
• National PBCR(2.5 million)
• Staff for active finding
• Commitment to PBCR
• CanReg5• Quality evaluation• Analysis / use of
data• Training
• HBCR since 2003• No NCCP
• PBCR in Kathmandu Valley(<2 million)
• HBCR to function• Commitment to
PBCR
NepalSri Lanka Mongolia
His
tory
Aim
Need
s
• 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.
Geography Rural Urban Total
Indonesia 110,965 (46%)
128,634 (54%)
239,600 (100%)
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%)
China744,282 (55%)
607,230 (45%)
13,515,12(100%)
Population (in thousands) : 2010
Source : http://esa.un.org/unup/p2k0data.asp
Urban and Rural Populations
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
• Prioritize government resources to cancer registration as an integral part of cancer control
• Increase coverage and quality in areas of the world currently underrepresented