Presentation on theme: "Freddie Bray International Agency on Research on Cancer"— Presentation transcript:
1IARC, Cancer Registries & Regional Hubs for Cancer Registration in LMIC Freddie Bray International Agency on Research on CancerFreddie Bray International Agency on Research on CancerSleman02 May 2013
2IARC: 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.The International Agency for Research on Cancer was established in May, 1965, through a resolution of the 18th World Health Assembly, as an extension of the World Health Organization, after a French initiative. As a WHO Agency, IARC follows the general governing rules of the UN family.
3IARC’s 22 Participating States Switzerland 1990Germany 1965Sweden 1979Australia 1965Austria 2008Russian Federation 1965United Kingdom 1965Belgium 1970Rep. of Korea 2006Canada 1982IARC GovernanceGoverning CouncilScientific CouncilIt is governed by its own Governing bodies, however, the IARC Governing Council (GC) and the IARC Scientific Council (SC).Governing CouncilIARC's general policy is directed by a Governing Council, composed of the Representatives of Participating States and of the Director-General of the World Health Organization. Its research programme is regularly reviewed by a Scientific Council. The Governing Council elects IARC's Director, who normally serves for a 5-year term. The Council elected Dr Christopher Wild in May, 2008, to serve for a 5-year term; he took office on January 1, 2009.Scientific CouncilThe Scientific Council consists of highly qualified scientists, selected on the basis of their technical competence in cancer research and allied fields. Members of the Scientific Council are appointed as experts and not as representatives of Participating States. When a vacancy arises on the Scientific Council, the Participating State that nominated the departing member may nominate up to two experts to replace that member. Scientific Council members are appointed for 4-year terms by the Governing Council. The purpose of this Council is, among other things, to make periodical evaluations of IARC's activities, to make recommendations on the programme of permanent activities and to prepare special projects to be submitted to the Governing Council. SessionThe Scientific Council of the International Agency for Research on Cancer meets every year in ordinary session in late January-early February. It last met on 1–3 February 2012 (Chairperson, Professor Ian Frazer [Australia]), and the next session is scheduled for 30 January– 1 February 2013 (incoming Chairperson, Professor Mads Melbye [Denmark]). SecretariatThe Secretariat is the administrative and technical organ of the Agency. It consists of the Director and the technical and administrative staff. The Director of IARC is elected by, and reports to, the Governing Council. The Director is responsible for the development and implementation of the scientific programme and oversees the day-to-day operation of the Agency. SessionThe Governing Council of the International Agency for Research on Cancer meets every year in ordinary session the week prior to the WHO World Health Assembly. This year's session will take place on May 2012 at IARC's Headquarters in Lyon. Professor P. Puska (Finland) will chair the session.Netherlands 1967Denmark 1990Norway 1987Spain 2003Japan 1972United States 1965Italy 1965Finland 1986Ireland 2007France 1965Turkey 2011India 2006
4Key Principles Priority areas Describing the global cancer burdenIARC MonographsCancer aetiologyMechanisms of carcinogenesisCancer preventionEducation & trainingPrimary role is researchPromote collaborationInterdisciplinary researchWorldwide mandateEducation & Training1 Primary role is researchDistinguishing the Agency from other international cancer organizations that focus on policy to effect cancer controlComplementary to WHO, in translating research into advice and policyThe Agency devotes its resources to research and the generation of new information that provides the evidence-base for cancer prevention and control2 Collaboration in researchIncreasingly importantlarge multi-centre international studies to identify risk factors;efficiencies and economies of effort in times of limited resources.development of research capacity through collaborationCreating added value by promoting cooperation among the international cancer research community is a strong feature of the Agency’s activities3 Interdisciplinary researchOpportunity for a new understanding of the complexity of carcinogenicity combined with technological advances promises a level of refinement of measurement not previously available to epidemiology.Understanding mechanisms of carcinogenesis and the translation of this knowledge to both identifying the causes of cancer and providing the scientific rationale for its prevention characterizes the work of the Agency4 Worldwide mandatePermits a collective response from Participating States for support in areas of the world where resources for cancer research are limited.Benefit from unprecedented collaborative networks and a strong reputation in low and middle-income countries.These qualities combined with its mandate mean IARC plays a leading role in conducting and supporting research in the regions where it is most needed in the coming years5 Education and trainingBuilding a new generation of cancer researchers worldwide with the motivation and skills to tackle the global cancer burden.The Agency places emphasis, drawing on partnerships where appropriate and using modern technology to transfer its knowledge base to the individuals and organizations where it will have most impact
5IARC Organizational Structure The scientific work of IARC is organized into research Sections, which themselves are composed of one or more research Groups. The Sections focus on particular areas of cancer research, while often collaborating closely on issues of common interest. Scientific staff include visiting scientists and post-doctoral students in addition to short- and long-term staff members. IARC takes very seriously its role in training the next generation of cancer researchers, and its worldwide perspective is reflected in the development of expertise in people who will return to work in low- to medium-income countries. Many students complete part or all of their studies for higher qualifications at IARC and make valuable contributions to the research programmes before pursuing a cancer research career elsewhere. IARC currently has around 300 staff coming from more than 50 countries.
6Courses in cancer registration: 2010-13 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 FrenchMumbai (March 2012)Cali (Oct 2012) in SpanishAbuja (Nov 2012)Bangkok (March 2013)Jakarta (May 2013)Izmir (July 2013)Chennai (Sept 2013)
7Representation of Surveillance activities Section of Cancer Information Global Indicators - Collection - Analysis - DisseminationRegistry CollaborationRegistry SupportWhat is global surveillanceRoutine / ad hoc publicationsDescriptive Epidemiologic Research‘Cutting-edge’
8Section of Cancer Information: Global Surveillance Dissemination of Global Indicators incidence mortality survival prevalence DALYsDescriptive epidemiological research comprehensive collaborative methods-driven cutting-edgeClose cooperation & support for cancer registries in LMIC - IARC Regional Hubs for Cancer Registration technical support training research advocacy networking2012A comprehensive national cancer control programme requires a systemof surveillance of cancer, its determinants, and outcomes. Over the past50 years, the concept of cancer surveillance has evolved, centred upon thepopulation-based cancer registry as a core component of the cancer controlstrategy (Greenwald, Sondik, Young, 1986; Armstrong, 1992). The rolesof cancer surveillance are:• to assess the current magnitude of the cancer burden and its likely futureevolution;• to provide a basis for research on cancer causes and prevention;• to provide information on prevalence and trends in risk factors;• to monitor the effects of prevention, early detection/screening, treatment,and palliative care.To enable The Agency needs to strengthen its efforts to expand the coverage, continuity, and quality of cancer registration, particularly in regions where data are lacking, through provision of training, setting standards and quality control. Where population-based cancer registration is not feasible in the short-term, alternative approaches to exploring cancer occurrence will be developed.
10The global burden of cancer 12.7m new cases in 2008, 56% in less developed regions21.3m estimated for 2030*, 60% in less developed regions*assuming no change in risk from 2008The burden of cancer is rising markedly worldwide with estimates indicating that there willbe double the current number of new cases per year by The majority of the increase isexpected in low- and middle-income countries where health services are least able to meet theimpending challenge. If left un-addressed this rise in cancer cases will create enormoushardships at the economic, social and personal levels.The International Agency for Research on Cancer (IARC) must orientate its activities over the next two decades such that it can best contribute to combating the projected increase in the global cancer burden. It should make its contribution in a way that is consistent with its Statute, plays to its strengths as an international organization and makes most effective use of its partnerships nationally and internationally. In this context the Agency will continue to prioritize interdisciplinary work and has a particular focus on low and middle-income countries. At the core of its function is the generation of evidence, through the conduct of novel research, which informs strategies for cancer prevention and control.More developedLess developed5.6m cancercases 20087.1m cancercases 200821.3m cancercases 203035% increaseby 203080% increaseby 2030
11Ranking of age-standardised rates of mortality for cancer vs 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
12A world in transition: (i) trends in HDI in selected countries ; (ii) traditional view of developed vs. developing; (iii) four levels of HDI circa 2007;.(ii)(i)HDI trends (Source: UNDP 2010)NorwaySwedenQatarUruguayRussiacirca 1970ColombiaChinaFixed notion of what nations are developed and developing is outdated..The Human Development IndexThe forthcoming Sections in this Chapter examine the cancer profiles with respect to the current burden, recent trends and the future burden at the global, world region, and national level. It is important to understand these patterns and trends in relation to rapidly changing levels of development over the last decades as a means to better understand how demographic and epidemiologic transitions are impact on the overall cancer burden and the changing types of cancer we are seeing in our different communities. We present these metrics for specific cancer types by sex globally and by world region, as well as according to a country’s level of the Human Development Index (HDI), a summary measure of human development, which (for the 2007 UNDP estimates) is a composite index of three basic dimensions of human development, namely a long and healthy life (based on life expectancy at birth), access to knowledge (based on a combination of adult literacy rate and primary to tertiary education enrolment rates) and a decent standard of living (based on GDP per capita adjusted for purchasing-power parity (PPP US$)).The Human Development Index (HDI) was introduced as an alternative to more conventional measures of national development, including level of income and rate of economic growth and can used to assess national policy choices, e.g. how two countries with the same level of GNI per capita (for instance) can end up with very different human development outcomes. While they are highly correlated, GNI per capita only reflects average national income and not how that income is spent, whether on universal health, education or military expenditure.To examine aspects of the cancer burden according to levels of resource and extent of societal development, we used predefined categories of the distribution: low HDI (HDI<0.5); medium HDI (0.5≤HDI<0.8); high HDI (0.8≤HDI<0.9) and very high HDI (HDI≥0.9). The global breakdown by country within each development level is shown in Figure 4c(ii) and the specific countries are listed in the Appendix. We also combined the high HDI and very high HDI levels, and low HDI and medium HDI levels, to create lower HDI and higher HDI areas, as alternatives to the traditional grouping (see (Figure 4c(iii) of more developed (North America, Europe, Australia, New Zealand, and Japan) and less developed regions (all other areas of the world).Moroccocirca 2011Kenya(iii)UgandaCongo (Dem Rep)19702011
13BurdenOf 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 RegistriesCurrent 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.
14Support to Registries – IARC Regional Hubs for Cancer Registration technical support training research advocacy networkingGlobal Indicators - Collection - Analysis - DisseminationWhat is global surveillanceRegistry SupportRegistry CollaborationRoutine / ad hoc publicationsDescriptive Epidemiologic Research‘Cutting-edge’
15Process of Cancer Registry in Indonesia : Expanding to Urban-Rural Areas2012 : PBCR in Jakarta2011 : Data submit to CI5 Volume X and IICC-32010 : Population-based Cancer Registry 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 Registry1987 : Pathological-based Cancer Registry in 13 Centers Diagnostic of Pathology1970 : Population-based Cancer Registry in Semarang, Central Java
16Action 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 mortalityA comprehensive global monitoring framework to monitor trends and assess progress made in the implementation of national strategies & plans on NCDsCancer Incidence (collected by population-based cancer registries), including a set of indicators .. across regional and country settings
18Cancer Incidence in Five Continents 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)% population covered by cancer registries in Vol. IX(number of registries/number of countries providing data)Existing health information systems and registries should be strengthened to ensureeffective data collection. Health information systems for cervical cancer should be ableto monitor coverage of screening and adequate treatment using WHO indicators, andstrengthen cancer registries to measure programme impact.
19Inclusion of sub-Saharan African cancer registries in CI5 I-IX CountryRegistryCI5 volumes123456789MaliBamakoxMozambiqueLourenço MarquesNigeriaIbadanSenegalDakarSouth AfricaJo’burg BantuNatal AfricanNatal IndianThe GambiaUgandaKampalaZimbabweHarare AfricanHarare European
20What is cancer registration? Cancer RegistryThe office or institution which is responsible for the collection storage, analysis and interpretation of data on persons with cancerCancer registrationThe 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 populationThe population covered is usually that of a geographic areaThe main interest is for epidemiology and public healthHospital-Based Cancer RegistriesRecords all cases of cancer treated in a given hospitalThe purpose is to serve the needs of the hospital administration, the hospital's cancer programmeThe population from which the cases come is not definedPathology-Based Cancer RegistriesCollect information from one or more laboratories on histologically-diagnosed cancersInformation is of high diagnostic quality but difficult to generaliseThe population from which the tumour tissue has come is not defined
21Cancer Registries – characteristics by development Key areasHigh IncomeLow/Middle IncomeData CollectionPassiveActive + PassiveHealth information systemComputerisedPaper-basedAccess to health servicesExcellentModerate to PoorCase confirmationHigh Microscopic VerificationModerateRecord LinkagePossibleDifficultFollow upGoodPoorDeath registration/certification
22Planning for a PBCR Clear definition of the catchment population Size of population and number of casesDecide on optimal size of the population covered by the registryPhysical location of the registryLegal aspects and confidentialityAdvisory committeeSeek cooperation / support of medical community.Representatives of funder(s), sources and users of dataPersonnelLeadership of PBCR DirectorNecessity of adequate staffing, expertise and trainingEquipment (IT - linkage of sources) / office spaceFinancingDependant on size of area, data items collected, different sources etc.The importance of registration in a comprehensive cancer control programme shouldbe stressed when putting the case for starting a registry. The registry's success willdepend on the cooperation of the medical profession, and it is worth putting time andeffort into establishing and maintaining relations with the local medical community.At the same time it must be borne in mind that a cancer registry is a long-termoperation: the first valid results cannot necessarily be anticipated for several yearsafter beginning operations. By its nature, the registry will expand and requireincreasing material support as time goes by. It is therefore vital to ensure that theadministrative and financial plans make provision for expansion, both as a result ofthe increasing number of cases in the register and the increasing possibilities for usingthe data.
23The 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 registriesGICR is an IARC initiative, backed by a number of major international partnersFundraising program being developed with UICC with a minimum target $5m over 5 yearsGiven our Agency’s commitment to this area, the close working relationship with the International ACR and UICC, we determined to address this challenge.
24The Global Initiative for Cancer Registry Development First IARC Regional hub for the Asia region established at the Tata Memorial Centre in Mumbai (India) in 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 GroupWe announced the conception of GICR at the WCLS 2011; just nine months later we have a healthy bouncing baby but which needs nurture and nourishment. Hubs are taking form, some financing is being generously provided but we need to make a push on this area; the time is now; we have the expertise; the networks the political agenda – now we need the resources.
25Technical support Training Research Advocacy & Networking
26Availability of Cancer Registries Worldwide – last 10 years
27Enhancing Cancer Registration via Hubs: the regional perspective PaBCR=Pathology-Based RegistryCI5 inclusionPBCRHBCR orPaBCRCR not yetestablishedB. Potential to become population-basedC. Potential to beof CI5 standardD. CI5RegistryA. No dataCurrent level attained
28Enhancing Cancer Registration via Hubs: the regional perspective PaBCR=Pathology-Based RegistryCI5 inclusionPBCRHBCR orPaBCRCR not yetestablishedB. Potential to become population-basedC. Potential to beof CI5 standardD. CI5RegistryA. No dataCurrent level attainedEnhanced level via Hub support
30Support for Registration Hub as 1st point of callInitial response to all queries.Support and advice re:CanReg5registration methods, coding and classificationdata quality, statistical analyses and presentationAd hoc consultancy, advice and advocacy, direct supportincluding site visitsSupport identification and delivery of collaborative agreements with registries.TrainingSupportResearchNetworking
31Activities 2012-13 Direct Support Training Advocacy Networking CanReg5 Installation & AssistanceCollaborative Agreements:Indonesia (2012)Mongolia (2012)Sri Lanka (2012)Courses:Mumbai (2012)Bangkok (Mar 2013)Jakarta (May 2013)Chennai (Sept 2013)Direct SupportTrainingData Quality / Costing:India / ThailandFirst Registry Reports:IndonesiaMongoliaSri LankaCancer in AsiaSite visits:Nepal (2012)Bhutan (2013)Thailand (2013) Indonesia (2013)Cambodia (2013)Vietnam (2013)Bangladesh (2013)Advocacy NetworkingResearch
32Population Based Cancer Registries - S&E Asia IndonesiaMongoliaSri LankaBangladeshBhutanCambodiaNepalMyanmarLaosEstablishedPotentialChinaIndiaJapanSouth KoreaSingaporeThailandPhilippinesVietnamPakistanMalaysia
33Population Based Cancer Registries - Progress HBCR since 1960Part of NCCPNational PBCR (2.5 million)Staff for active findingCommitment to PBCRCanReg5Quality evaluationAnalysis / use of dataTrainingHBCR since 2003No NCCPPBCR in Kathmandu Valley (<2 million)HBCR to functionNepalSri LankaMongoliaHBCR since 1980Part of NCCPPBCR in Colombo (2.6 million)More staff (registrars)CanReg5Quality evaluationAnalysis / use of dataHistoryAimNeeds
34Urban and Rural Populations Population (in thousands) : 2010 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.GeographyRuralUrbanTotalIndonesia110,965 (46%)128,634 (54%)239,600(100%)Sri Lanka16,614 (85%)2962(15%)19,576Nepal24,451 (82%)5,447(18%)29,898Thailand43,007 (66%)22,118 (34%)65,125China744,282 (55%)607,230 (45%)13,515,12Source :
35Cancer incidence in urban and rural India Site of CancerSouth RuralSouth UrbanWest RuralWest UrbanDindugilChennaiBarshiMumbai2005Cervix22.122.022.812.9Breast10.932.29.430.3Ovary220.127.116.11.9Mouth18.104.22.168.6Stomach22.214.171.124.4Esophagus126.96.36.199Large bowel188.8.131.52.0Leukaemia184.108.40.206.1Thyroid1.13.0<0.1Brain1.02.1All Sites62.611859.9102.3
36Jakarta Cancer Registry (urban population-based)Sleman Cancer Registry(rural population-based)
39Challenges and opportunities for future cancer registration Increase coverage and quality in areas of the world currently underrepresentedPrioritize government resources to cancer registration as an integral part of cancer controlSo in summary, the nine elements of descriptive epidemiological research hopefully represent new areas of work or innovations that are founded and complementary to the core activities of the Section, are in line and with the medium-term strategy of IARC and build on our existing collaboration with our friend and colleagues within this Agency and among our many colleagues worldwide..