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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. Freddie Bray  International Agency on Research on Cancer. Sleman 02 May 2013 . IARC: an international effort to combat cancer.

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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.

  3. 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 Governing Council Scientific Council Netherlands 1967 Denmark 1990 Norway 1987 Spain 2003 United States 1965 Japan 1972 Finland 1986 Italy 1965 France 1965 Ireland 2007 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

  5. IARC Organizational Structure

  6. 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)

  7. 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’ 

  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

  9. Lancet 2012;380(9856):1840-50. Lancet Oncology 2012;13(8):790-801. Int J Cancer. 20;132(5):1133-45

  10. The global burden of cancer • 12.7m new cases in 2008, 56% in less developed regions • 21.3m estimated for2030*, 60% in less developed regions *assuming no change in risk from 2008 Less developed More 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. 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 1970-2011 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) Norway Sweden Qatar Uruguay circa 1970 Russia Colombia China Morocco circa 2011 Kenya (iii) Uganda 0 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  Registry Support Registry Collaboration • Routine / ad hoc publications  Descriptive Epidemiologic Research • ‘Cutting-edge’ 

  15. 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

  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)

  17. National mortality series: availability

  18. 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)

  19. Inclusion of sub-Saharan African cancer registries in CI5 I-IX

  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. Cancer Registries – characteristics by development

  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.

  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 http://gicr.iarc.fr/

  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 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 inLatin-America and Caribbean with local partners (RINC) • Hub Executive Group http://gicr.iarc.fr/

  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 C. Potential to be of CI5 standard D. CI5 Registry B. Potential to become population-based 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 C. Potential to be of CI5 standard D. CI5 Registry B. Potential to become population-based 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. Support Training Research Networking

  31. Activities 2012-13 • 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 2003-7 • Site visits: • Nepal (2012) • Bhutan (2013) • Thailand (2013) Indonesia (2013) • Cambodia (2013) • Vietnam (2013) • Bangladesh (2013) AdvocacyNetworking Research

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

  33. Population Based Cancer Registries - Progress • HBCR since 1980 • Part of NCCP • PBCR in Colombo(2.6 million) • More staff (registrars) • CanReg5 • Quality evaluation • Analysis / use of data Mongolia Nepal Sri Lanka • HBCR since 2003 • No NCCP • PBCR in Kathmandu Valley(<2 million) • HBCR to function • Commitment to PBCR • 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 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. Source : http://esa.un.org/unup/p2k0data.asp

  35. Cancer incidence in urban and rural India

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

  37. 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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