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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.

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Presentation on theme: "Freddie Bray  International Agency on Research on Cancer IARC, Cancer Registries & Regional Hubs for Cancer Registration in LMIC Freddie Bray  International."— Presentation transcript:

1 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

2 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.

3 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 Council Scientific Council Turkey 2011

4 Key Principles Priority areas 1.Describing the global cancer burden 2.IARC Monographs 3.Cancer aetiology 4.Mechanisms of carcinogenesis 5.Cancer prevention 6.Education & training 1.Primary role is research 2.Promote collaboration 3.Interdisciplinary research 4.Worldwide mandate 5.Education & Training

5 IARC Organizational Structure

6 Courses in cancer registration: Annual IARC Summer School Module (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)

7 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

8 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

9 Lancet Oncology 2012;13(8): Lancet 2012;380(9856): Int J Cancer. 20;132(5):

10 *assuming no change in risk from m cancer cases m cancer cases % increase by m cancer cases % 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

11 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

12 0 A world in transition: (i) trends in HDI in selected countries ; (ii) traditional view of developed vs. developing; (iii) four levels of HDI circa 2007;. circa 1970 circa 2011 Norway Sweden Qatar Uruguay Russia Colombia China Morocco Uganda Kenya Congo (Dem Rep) 2011 HDI trends (Source: UNDP 2010) 1970 (ii) (i) (iii)

13 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.

14 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 

15 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 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 : PBCR in Jakarta : Expanding to Urban-Rural Areas

16 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

17 National mortality series: availability

18 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 (number of registries/number of countries providing data)

19 Inclusion of sub-Saharan African cancer registries in CI5 I-IX CountryRegistryCI5 volumes MaliBamakoxxx MozambiqueLourenço Marquesx NigeriaIbadanxxx SenegalDakarx South AfricaJo’burg Bantux Natal Africanx Natal Indianx The Gambiaxx UgandaKampalaxxxx ZimbabweHarare Africanxxx Harare Europeanx

20 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

21 Key areasHigh IncomeLow/Middle Income Data CollectionPassiveActive + Passive Health information system ComputerisedPaper-based Access to health services ExcellentModerate to Poor Case confirmationHigh Microscopic Verification Moderate Record LinkagePossibleDifficult Follow upGoodPoor Death registration/ certification ExcellentPoor Cancer Registries – characteristics by development

22 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

23 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 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

24 First IARC Regional hub for the Asia region established at the Tata Memorial Centre in Mumbai (India) in Inaugurated October 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

25 Technical support Training Research Advocacy & Networking

26 Availability of Cancer Registries Worldwide – last 10 years

27 CI5 inclusion PBCR HBCR or PaBCR CR not yet established 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

28 CI5 inclusion PBCR HBCR or PaBCR CR not yet established 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

29 Data availability – cancer incidence

30 Support for Registration Training Support Research Networking Hub as 1 st 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.

31 Research Training Advocacy Networking 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 / Thailand First Registry Reports: Indonesia Mongolia Sri Lanka Cancer in Asia Activities

32 China India Japan South Korea Singapore Thailand Philippines Vietnam Pakistan Malaysia Population Based Cancer Registries - S&E Asia Indonesia Mongolia Sri Lanka Bangladesh Bhutan Cambodia Nepal Myanmar Laos Established Potential

33 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 Nepal Sri Lanka Mongolia History Aim Needs

34 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. GeographyRuralUrbanTotal 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%) China 744,282 (55%) 607,230 (45%) 13,515,12 (100%) Population (in thousands) : 2010 Source : Urban and Rural Populations

35 Cancer incidence in urban and rural India Site of CancerSouth RuralSouth UrbanWest RuralWest Urban DindugilChennaiBarshiMumbai Cervix Breast Ovary Mouth Stomach Esophagus Large bowel Leukaemia Thyroid1.13.0< Brain All Sites

36 Jakarta Cancer Registry (urban population-based) Sleman Cancer Registry (rural population-based)

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39 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


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