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Cancer Registration and Cancer Control in Asia IACR Workshop: Beijing 16 th Sept. 2004 Cancer Registration and Cancer Control in Asia IACR Workshop: Beijing 16 th Sept. 2004

THE POPULATION BASED CANCER REGISTRY IS THE INDISPENSIBLE FOUNDATION OF A SURVEILLANCE SYSTEM 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 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 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. 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, 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 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 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 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 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 • 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 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 rural urban rural MORTALITY TRENDS: CHINA 1987 -1999 urban CERVIX BREAST rural urban rural MORTALITY TRENDS: CHINA 1987 -1999 urban

Estimates and projections of national cancer incidence & mortality Estimates and projections of national cancer incidence & mortality

PLANNING & EVALUATION OF CCP MONITORING CANCER CONTROL 1 Primary prevention Time trends ? 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 • 75 Intermediate endpoints 50 ØNever screenedand stage of screen-detected cases Size screened ØEver. Incidence of interval cancers Normal test Ø Incidence of advanced cancers DENMARK Reference period 1958 -67 FINLAND ICELAND NORWAY SWEDEN 0 25 20 30 1945 40 1950 50 1955 60 1960 70 1970 80 1975 901980 1965

PLANNING & EVALUATION OF CCP MONITORING CANCER CONTROL 1 Primary prevention Time trends ? 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, 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 Quality Natural history Clinical extent FACTORS INFLUENCING SURVIVAL FROM CANCER Disease: Treatment: Availability Access Quality Natural history Clinical extent Definitions 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 Trends in 5 -Year Relative Survival from Selected Cancers in Women, Singapore, 1968 -92

PLANNING & EVALUATION OF CCP MONITORING CANCER CONTROL 1 Primary prevention Time trends ? 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 • 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)

ã Why do we need cancer registries ã Current situation in Asia ã Why do we need cancer registries ã Current situation in Asia

ASIA – 12 COUNTRIES REPRESENTED Russia Kazakhstan Mongolia Kyrgyzstan Turkey JAPAN KOREA Turkmenstan Tajikstan ASIA – 12 COUNTRIES REPRESENTED Russia Kazakhstan Mongolia Kyrgyzstan Turkey JAPAN KOREA Turkmenstan Tajikstan CHINA Syria ISRAEL Iran Iraq Lebanon Afghanistan Jordan PAKISTAN KUWAIT Egypt Bhutan Nep al Qatar. Saudi Arabia U. A. E. Karachi INDIA Bangladesh Burma Laos PHILIPPINES OMAN Sudan Yemen THAILAND VIET NAM Cambodia Arabian Sea Sri Lanka Malaysia So m al ia Ethiopia Uganda Kenya SINGAPORE Manila & Rizal

India Afghanistan 9 registries INDIA – 9 registries China Pakistan Delhi Nepal Bhutan Bangladesh India Afghanistan 9 registries INDIA – 9 registries China Pakistan Delhi Nepal Bhutan Bangladesh Ahmedabad Burma Nagpur Mumbai (Bombay) Poona Bay of Bengal Arabian Sea Bangalore Chennai (Madras) Karunagappally Trivandrum Sri Lanka

South-East Asia China Burma VIETNAM Hanoi Chiang Mai Laos Lampang THAILAND Khon Kaen Bangkok 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 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 Wuhan Jiashan Qidong County Russia Kazakhstan China 10 Mongolia registries Korea Beijing Tianjin Cixian Wuhan Jiashan Qidong County Shanghai Ne pa l Bhutan Changle India Taiwan Bangladesh Burma Viet Nam Hong Kong Laos South China Sea Bay of Bengal Thailand Philippines

CI 5 incidence data % population coverage, 1995 26. 2% 32% 4. 7% 3% CI 5 incidence data % population coverage, 1995 26. 2% 32% 4. 7% 3% 12. 7% 1 % 82%

INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES Membership 447 385 402 366 Oceania 191 Europe 134 INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES Membership 447 385 402 366 Oceania 191 Europe 134 N. America S. America Asia Africa 91 92 ASIAN MEMBERS 458

Incidence data % population coverage, around 1995 36. 5% 99% 7% 19. 6% 8 Incidence data % population coverage, around 1995 36. 5% 99% 7% 19. 6% 8 % 10. 5% 86%

ã Why do we need cancer registries ã Current situation in Asia ã What’s ã Why do we need cancer registries ã Current situation in Asia ã What’s new?

GULF STATES: 6 population-based registries Now joined by Yemen: The Aden Cancer Registry 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 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 Fig 8. Districtwise Microscopic Age Adjusted Incidence Rates (MAAR) Per 100, 000 Stomach (ICD 10 : C 16) 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 Population -based cancer registry Active surveillance Tehran

KOREA: National population-based cancer registry network Using the existing “Korean Central Cancer Registry” – KOREA: National population-based cancer registry network 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 another THAILAND Cancer in Thailand, vol III based on the established 5 Registries There another 5 -6 start-ups

CHINA: Survey of cancer registries nationwide Information from 48 PBCRs They cover 5. 7% CHINA: Survey of cancer registries nationwide Information from 48 PBCRs They cover 5. 7% population Qiqihaer Haerbin of China Wuwai Tianjin Boli Ningan Shenyang Anshan Chicheng Beijing Jiamusi Dalian Ganyu Zanghuang Jiaxian Yangcheng Huaian Shexian Linqu Cixian Feicheng Linzhou Jianhu Taixing Luoyang Jintan Lueyang Yanting Jiaxing Wuhan To be published in Eur. J. Cancer Prevn. Shanghai Jiashan Haining Hangzhou Changle Gejiu Tin Mine Fusui Guangzhou (1, 2) Shenzhen Sihui Hong Kong Zhongshan Dafeng Yangzhong Haian Haimen Qidong Shanghai

ã Why do we need cancer registries ã Current situation in Asia ã What’s ã Why do we need cancer registries ã Current situation in Asia ã What’s new ã The role of IACR

International Association of Cancer Registries Founded in 1966 Aims: To improve quality of data 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 Ottawa, 1992

SUPPORT TO CANCER REGISTRIES 1. International Standards 2. Publications related to cancer registration 3. 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 CANCER REGISTRATION PRINCIPLES AND METHODS

Comparability and quality control in Cancer Registration Manual for Cancer Registry Personnel ICD Conversion 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 IACR MEETINGS 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 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 2003 Honolulu, Hawaii

Beijing, China, 2004 THANK YOU. See you next year (and before that, I hope!) Beijing, China, 2004 THANK YOU. See you next year (and before that, I hope!)