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Freddie Bray  International Agency on Research on Cancer

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1 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

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. 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.

3 IARC’s 22 Participating States
Switzerland 1990 Germany 1965 Sweden 1979 Australia 1965 Austria 2008 Russian Federation 1965 United Kingdom 1965 Belgium 1970 Rep. of Korea 2006 Canada 1982 IARC Governance Governing Council Scientific Council It is governed by its own Governing bodies, however, the IARC Governing Council (GC) and the IARC Scientific Council (SC). Governing Council IARC'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 Council The 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. Session The 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]). Secretariat The 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. Session The 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 1967 Denmark 1990 Norway 1987 Spain 2003 Japan 1972 United States 1965 Italy 1965 Finland 1986 Ireland 2007 France 1965 Turkey 2011 India 2006

4 Key Principles Priority areas
Describing the global cancer burden IARC Monographs Cancer aetiology Mechanisms of carcinogenesis Cancer prevention Education & training Primary role is research Promote collaboration Interdisciplinary research Worldwide mandate Education & Training 1 Primary role is research Distinguishing the Agency from other international cancer organizations that focus on policy to effect cancer control Complementary to WHO, in translating research into advice and policy The Agency devotes its resources to research and the generation of new information that provides the evidence-base for cancer prevention and control 2 Collaboration in research Increasingly important large multi-centre international studies to identify risk factors; efficiencies and economies of effort in times of limited resources. development of research capacity through collaboration Creating added value by promoting cooperation among the international cancer research community is a strong feature of the Agency’s activities 3 Interdisciplinary research Opportunity 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 Agency 4 Worldwide mandate Permits 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 years 5 Education and training Building 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

5 IARC 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.

6 Courses 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 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 Representation of Surveillance activities Section of Cancer Information
Global Indicators - Collection - Analysis - Dissemination Registry Collaboration Registry Support What is global surveillance Routine / ad hoc publications Descriptive Epidemiologic Research ‘Cutting-edge’

8 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 A comprehensive national cancer control programme requires a system of surveillance of cancer, its determinants, and outcomes. Over the past 50 years, the concept of cancer surveillance has evolved, centred upon the population-based cancer registry as a core component of the cancer control strategy (Greenwald, Sondik, Young, 1986; Armstrong, 1992). The roles of cancer surveillance are: • to assess the current magnitude of the cancer burden and its likely future evolution; • 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.

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

10 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 The burden of cancer is rising markedly worldwide with estimates indicating that there will be double the current number of new cases per year by The majority of the increase is expected in low- and middle-income countries where health services are least able to meet the impending challenge. If left un-addressed this rise in cancer cases will create enormous hardships 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 developed Less developed 5.6m cancer cases 2008 7.1m cancer cases 2008 21.3m cancer cases 2030 35% increase by 2030 80% increase by 2030

11 Ranking 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

12 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;. (ii) (i) HDI trends (Source: UNDP 2010) Norway Sweden Qatar Uruguay Russia circa 1970 Colombia China Fixed notion of what nations are developed and developing is outdated.. The Human Development Index The 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). Morocco circa 2011 Kenya (iii) Uganda Congo (Dem Rep) 1970 2011

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 Support to Registries – IARC Regional Hubs for Cancer Registration  technical support  training  research  advocacy  networking Global Indicators - Collection - Analysis - Dissemination What is global surveillance Registry Support Registry Collaboration Routine / ad hoc publications Descriptive Epidemiologic Research ‘Cutting-edge’

15 Process of Cancer Registry in Indonesia
: Expanding to Urban-Rural Areas 2012 : PBCR in Jakarta 2011 : Data submit to CI5 Volume X and IICC-3 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) 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

16 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) , including a set of indicators .. across regional and country settings

17 National mortality series: availability

18 Cancer 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 ensure effective data collection. Health information systems for cervical cancer should be able to monitor coverage of screening and adequate treatment using WHO indicators, and strengthen cancer registries to measure programme impact.

19 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 Mozambique Lourenço Marques Nigeria Ibadan Senegal Dakar South Africa Jo’burg Bantu Natal African Natal Indian The Gambia Uganda Kampala Zimbabwe Harare African Harare European

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 Hospital-Based Cancer Registries Records all cases of cancer treated in a given hospital The purpose is to serve the needs of the hospital administration, the hospital's cancer programme The population from which the cases come is not defined Pathology-Based Cancer Registries Collect information from one or more laboratories on histologically-diagnosed cancers Information is of high diagnostic quality but difficult to generalise The population from which the tumour tissue has come is not defined

21 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

22 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 importance of registration in a comprehensive cancer control programme should be stressed when putting the case for starting a registry. The registry's success will depend on the cooperation of the medical profession, and it is worth putting time and effort 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-term operation: the first valid results cannot necessarily be anticipated for several years after beginning operations. By its nature, the registry will expand and require increasing material support as time goes by. It is therefore vital to ensure that the administrative and financial plans make provision for expansion, both as a result of the increasing number of cases in the register and the increasing possibilities for using the data.

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 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 Given our Agency’s commitment to this area, the close working relationship with the International ACR and UICC, we determined to address this challenge.

24 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 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 We 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.

25 Technical support Training Research Advocacy & Networking

26 Availability of Cancer Registries Worldwide – last 10 years

27 Enhancing Cancer Registration via Hubs: the regional perspective
PaBCR=Pathology-Based Registry 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 A. No data Current level attained

28 Enhancing Cancer Registration via Hubs: the regional perspective
PaBCR=Pathology-Based Registry 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 A. No data Current level attained Enhanced level via Hub support

29 Data availability – cancer incidence

30 Support for Registration
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. Training Support Research Networking

31 Activities 2012-13 Direct Support Training Advocacy Networking
CanReg5 Installation & Assistance Collaborative Agreements: Indonesia (2012) Mongolia (2012) Sri Lanka (2012) Courses: Mumbai (2012) Bangkok (Mar 2013) Jakarta (May 2013) Chennai (Sept 2013) Direct Support Training Data Quality / Costing: India / Thailand First Registry Reports: Indonesia Mongolia Sri Lanka Cancer in Asia Site visits: Nepal (2012) Bhutan (2013) Thailand (2013) Indonesia (2013) Cambodia (2013) Vietnam (2013) Bangladesh (2013) Advocacy Networking Research

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

33 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 Nepal Sri Lanka Mongolia HBCR since 1980 Part of NCCP PBCR in Colombo (2.6 million) More staff (registrars) CanReg5 Quality evaluation Analysis / use of data History Aim Needs

34 Urban 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. Geography Rural Urban Total Indonesia 110,965 (46%) 128,634 (54%) 239,600 (100%) Sri Lanka 16,614 (85%) 2962 (15%) 19,576 Nepal 24,451 (82%) 5,447 (18%) 29,898 Thailand 43,007 (66%) 22,118 (34%) 65,125 China 744,282 (55%) 607,230 (45%) 13,515,12 Source :

35 Cancer incidence in urban and rural India
Site of Cancer South Rural South Urban West Rural West Urban Dindugil Chennai Barshi Mumbai 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 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 Brain 1.0 2.1 All Sites 62.6 118 59.9 102.3

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



39 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 So 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..

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