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Cancer Registration and Cancer Control in Asia IACR Workshop: Beijing 16th Sept. 2004 THE POPULATION BASED CANCER REGISTRY IS THE INDISPENSIBLE FOUNDATION OF A SURVEILLANCE SYSTEM A cancer surveillance programme exists to: 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 early detection, screening, treatment, and palliative care. PURPOSES AND USES OF CANCER REGISTRATION 1 Epidemiological Research Descriptive Epidemiology Analytic Epidemiology 2 Health Care Planning and Monitoring Patient Care Survival Screening Prevention EPIDEMIOLOGY 1 Descriptive The information on exposure comes from routine sources (registers, records, surveys...) The variables are non-specific (indirect link to ‘causes’) 2 Analytic Information on exposure is collected from individual subjects Association between “risk factors” [possible ‘causes’] and disease Cervix Uteri, Incidence Rates by Education Level, Quito Residents. 1985-1999 Rate per 100,000 80.0 In-situ Invasive 70.0 60.0 50.0 40.0 30.0 20.0 10.0 0.0 None Primary Secondary Higher Education level Source N.T.R. Cancer in Ecuadorian regions 1997-1999 NCR, Solca Quito, 2001 Cancer in Scotland 1975-1980 Large Bowel, Females IARC Scientific Publications No. 72, 1985 Trends in Colon Cancer Incidence: ASIA Age Standardised Rate (World), MALES Singapore Chinese Hong Kong Osaka Manila ………………… …. ………………… …. ………………… .. Bombay PURPOSES AND USES OF CANCER REGISTRATION 1 Epidemiological Research Descriptive Epidemiology Analytic Epidemiology 2 Health Care Planning and Monitoring Patient Care Survival Screening Prevention USES OF CANCER REGISTRY PLANNING & EVALUATION OF CCPs I DEFINING THE PROBLEM •Burden of cancer •Past trends •Future projections CANCER INCIDENCE “Burden” of cancer as number of new cases • Priority for cancer control (prevention, treatment) • Estimating the resources required, based on numbers of new cases ( by age, stage, etc) CERVIX BREAST asr 2 4 Rate 4 Female Breast-Rural-Female 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 year Female Breast-Urban-Female urbanjpasr asr 6 6 4 4 2 1 2 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 year jpasr rural per 100,000 6 Rate per 100,000 Rate per 100,000 6 asr jpasr urban per 100,000 jpasr rural Rate asr 2 1 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 year Cervix uteri-Rural-Female 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 year Cervix uteri-Urban-Female MORTALITY TRENDS: CHINA 1987-1999 Estimates and projections of national cancer incidence & mortality 197222 200518 181481 Sto mach 97843 95942 88790 127726 131794 121508 O e s o pha rynx 57485 60598 63756 126204 107439 O t he r 106611 86844 62264 75619 256679 Liv e r 100945 84349 225486 162004 Lung 58620 285785 143151 224807 102836 134748 56468 58553 48869 32290 C o lo n R e c t um 40429 33913 25669 22975 21461 20197 C e rv ix 48164 34927 18857 B re a s t Year 2005 Le uk a e m ia Year 2000 Year 1991 N a s o pha rynx Male B la dde r 350000 300000 250000 200000 29640 26585 22861 19094 18322 17996 16400 15670 13207 7802 7095 5819 12935 11417 8203 150000 100000 50000 4430 3675 2845 0 Female 50000 100000 150000 200000 PLANNING & EVALUATION OF CCP MONITORING CANCER CONTROL 1 Primary prevention Time trends ? Control areas? 2 Screening & early detection •Outcomes (incidence or mortality) •Time trend studies (in relation to inputs) • Linkage with screening programme records (distinguish screened/unscreened individuals) Incidence per 100,000 women-years •Intermediate endpoints 75 50 NeverSize screenedand stage of screen-detected cases screened Ever Incidence of interval cancers Normal test IncidenceDENMARK of advanced cancers Reference period 1958-67 FINLAND ICELAND NORWAY SWEDEN 25 0 20 30 1945 40 1950 50 1955 60 1960 196570 197080 1975 90 1980 PLANNING & EVALUATION OF CCP MONITORING CANCER CONTROL 1 Primary prevention Time trends ? Control areas? 2 Screening & early detection Outcomes (incidence or mortality) Time trend studies (in relation to inputs) Linkage with screening programme records (distinguish screened/unscreened individuals) Intermediate endpoints Incidence of interval cancers Size and stage of screen-detected cases Incidence of advanced cancers 3 Treatment :Study of SURVIVAL 4 Cancer care EVALUATION OF CANCER CONTROL PROGRAMMES SURVIVAL DATA Effectiveness of Treatment in delaying/preventing death BUT, consider other factors influencing survival especially earlier diagnosis FACTORS INFLUENCING SURVIVAL FROM CANCER Disease: Treatment: Availability Access Natural history Clinical extent Definitions Quality Host: Early Detection: Age Sex Early clinical detection SES Screening Comorbidity Behaviour Trends in 5-Year Relative Survival from Selected Cancers in Women, Singapore, 1968-92 100 90 80 70 NASO COLON RSR 60 BREAST 50 CERVIX UTERI 40 OVARY THYROID 30 20 10 0 1970 1975 1980 Year 1985 1990 PLANNING & EVALUATION OF CCP MONITORING CANCER CONTROL 1 Primary prevention Time trends ? Control areas? 2 Screening & early detection Outcomes (incidence or mortality) Time trend studies (in relation to inputs) Linkage with screening programme records (distinguish screened/unscreened individuals) Intermediate endpoints Incidence of interval cancers Size and stage of screen-detected cases Incidence of advanced cancers 3 Treatment :Study of SURVIVAL 4 Cancer care EVALUATING CLINICAL CARE IN CCP Patterns of clinical care • Place of treatment • Percent treated by “specialists” • Percent of cases with adequate staging • Percentage on treatment protocols • Delay (diagnosis-treatment) Why do we need cancer registries Current situation in Asia ASIA – 12 COUNTRIES REPRESENTED Russia Kazakhstan Mongolia Kyrgyzstan Turkey JAPAN KOREA Turkmenstan Tajikstan CHINA Syria ISRAEL Iran Iraq Lebanon Afghanistan Jordan Egypt Bhutan PAKISTAN KUWAIT Qatar. Saudi Arabia U.A.E. Karachi INDIA Bangladesh Burma Laos PHILIPPINES OMAN Sudan VIET NAM Yemen Manila & Rizal THAILAND Cambodia Ethiopia Arabian Sea Sri Lanka Malaysia Uganda Kenya SINGAPORE India Afghanistan INDIA – 9 registries 9 registries China Pakistan Delhi Nepal Bhutan Bangladesh Ahmedabad Burma Nagpur Mumbai (Bombay) Poona Bay of Bengal Arabian Sea Chennai (Madras) Bangalore Karunagappally Trivandrum Sri Lanka South-East Asia China Burma VIETNAM Hanoi Chiang Mai Laos Lampang THAILAND Khon Kaen Bangkok Cambodia Andaman Sea Gulf of Thailand Ho Chi Minh City South China Sea Songkhla Malaysia Indonesia Malaysia SINGAPORE Indonesia Japan and Korea Russia China Yamagata KOREA Kangwha Seoul Miyagi North Pacific Ocean Daegu JAPAN Busan Hiroshima Saga Nagasaki East China Sea Osaka Russia Kazakhstan China 10 Mongolia registries Korea Beijing Tianjin Cixian Qidong County Shanghai Wuhan Jiashan Bhutan Changle India India Taiwan Bangladesh Hong Kong Burma Viet Nam Laos South China Sea Bay of Bengal Thailand Philippines CI5 incidence data % population coverage, 1995 26.2% 32% 4.7% 3% 12.7% 1% 82% INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES Membership 447 19 385 366 19 18 186 Oceania 134 Asia Africa 11 91 7 39 26 88 3 1979 9228ASIAN MEMBERS 87 92 38 54 68 48 83 37 40 68 74 24 28 30 42 44 1992 1996 1997 2002 2003 59 16 7 12 11 1982 1986 12 68 46 91 55 12 70 187 171 67 15 N. America S. America 163 191 Europe 19 402 20 144 458 Incidence data % population coverage, around 1995 36.5% 99% 7% 19.6% 8% 10.5% 86% Why do we need cancer registries Current situation in Asia What’s new? GULF STATES: 6 population-based registries Now joined by Yemen: The Aden Cancer Registry THE INDIAN CANCER ATLAS Using pathology-based data to obtain clues about geography of cancer Fig 8. Districtwise Microscopic Age Adjusted Incidence Rates (MAAR) Per 100,000 Stomach (ICD 10 : C16) Males Year 2001 - 2002 Imphal West (12.2) Dimapur (10.0) Lahul & Spiti (15.1) Senapati (8.7) Tamenglong (9.1) Churachandpur (19.2) Kolasib (56.1) East Sikkim (15.4) North Sikkim (27.7) Kohima (34.0) Ukhrul (11.2) Aizawl (47.0) Champai (46.3) Serchhip (70.2) Saiha (23.0) Lawngtlai (10.2) Lunglei (25.3) Mamit (53.4) Thiruvallur (10.7) Thrissur (12.6) Population -based cancer registry Active surveillance Tehran KOREA: National population-based cancer registry network 6 Seoul, 1990 Incheon, 1998 Area : 99,394 Km2 Population : 47,275,000 (2000) Daegu, 1997 Daejeon, 1997 7 metropolitan cities 9 provinces Ulsan, 2001 Pusan, 1995 Kwangju, 1997 Jeju, 2001 Using the existing “Korean Central Cancer Registry” – a hospital based system providing national level, but incomplete, data since 1980. THAILAND Cancer in Thailand, vol III based on the established 5 Registries There are another 5-6 start-ups CHINA: Survey of cancer registries nationwide Information from 48 PBCRs They cover 5.7% population Jiamusi Qiqihaer Boli Haerbin of China Ningan Shenyang Anshan Chicheng Beijing Wuwai Tianjin Dalian Ganyu Zanghuang Jiaxian Yangcheng Huaian Shexian Linqu Cixian Feicheng Linzhou Jianhu Taixing Luoyang Jintan Lueyang Yanting Jiaxing Wuhan To be published in Shanghai Jiashan Haining Hangzhou Changle Eur. J. Cancer Prevn. Gejiu Tin Mine Fusui Guangzhou (1,2) Shenzhen Sihui Hong Kong Zhongshan Dafeng Yangzhong Haian Haimen Qidong Shanghai Why do we need cancer registries Current situation in Asia What’s new The role of IACR International Association of Cancer Registries Founded in 1966 Aims: To improve quality of data and comparability between registries To disseminate information on the uses of cancer registry data SUPPORT TO CANCER REGISTRIES 1. International Standards 2. Publications related to cancer registration 3. Consultancy (+ WHO regions) 4. Training of staff 5. Fellowships 6. Computer software CANCER REGISTRATION PRINCIPLES AND METHODS Comparability and quality control in Cancer Registration Manual for Cancer Registry Personnel ICD Conversion Programs for Cancer International Classification of Childhood Cancer 1996 Guidelines on Confidentiality in the Cancer registry Histological Groups for Comparative Studies IACR MEETINGS 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 Hamburg, Germany Quito, Ecuador Ottawa, Canada Bratislava, Slovakia Bangalore, India Rio de Janeiro, Brazil Edinburgh, UK Abidjan, Ivory Coast Atlanta, USA Lisbon, Portugal Khon Kaen, Thailand Havana, Cuba Tampere, Finland Honolulu, Hawaii Beijing, China, 2004 THANK YOU. See you next year (and before that, I hope!)