Regional Figures on Cervical Cancer and Cancer Registries by Freddie Bray

Regional figures on cervical cancerand cancer registriesF BrayDeputy HeadSection of Cancer InformationInternational Agency for Research on Cancer (IARC)Lyon ◦ France • Cervix cancer burden • Global • EECARO and ASRO • Population-Based Cancer Registries (PBCR) • Role / implementation • Status of EECARO and ASRO • Future collaborative developments

IARC Medium-Term Strategy 2010-14Priority - Describing the Global Cancer Burden• The definitive international point of reference for collection, quality control, processing and statistical analysis of accurate data on cancer occurrence• Expanded coverage, continuity, and quality of cancer registration activities, particularly in regions where data are lacking• Improved access to information• A platform for research: risk factors; preventive interventions and targeted screening programmes

Cancer registration – a priority for cancer research, prevention and control• UICC World Cancer Declaration 2020 Second target • The measurement of the global cancer burden and the impact of cancer control interventions will have improved significantly• WHO 2008-2013 Action Plan• Global Strategy for the Prevention and Control of Non- communicable Diseases • Objective 6: To monitor NCDs and their determinants and evaluate progress at the national, regional and global levels

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.Cervix cancer control• Early detection & treatment of lesions of early stage cervical cancer will reduce the cancer burden by 5%.• New low-cost HPV screening tests, combined with HPV vaccination, have potential to improve cervical cancer control worldwidePopulation-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.

• cervical cancer – global burden

GLOBOCAN 2008 online http://globocan.iarc.fr

The Global Burden of Cervical Cancer1. Cervical cancer is the third most common cancer in women, and the seventh overall, with an estimated 529 000 new cases in 2008.2. More than 85% of the global burden occurs in developing countries, where it accounts for 13% of all female cancers.3. High-risk regions are Eastern and Western and Southern Africa, South-Central Asia, South America and Middle Africa. Rates are lowest in Western Asia, Northern America and Australia/New Zealand.4. Cervical cancer remains the most common cancer in women only in Eastern Africa, South-Central Asia and Melanesia.5. Cervical cancer is responsible for 275 000 deaths in 2008, about 88% of which occur in developing countries Ferlay et al, IJC 2010

Estimated incidence of cervical cancer (2008) Age-standardised rates per 100,000 GLOBOCAN 2008 (globocan.iarc.fr)

Cervical cancer: estimatedincidence & mortality (2008) Age-standardised rates per 100,000 GLOBOCAN 2008 (globocan.iarc.fr)

Arbyn et al, 2011Rank of cervical cancer mortality, among all female cancer sites women aged 15–44 years

Prediction of cervical cancer incidence and mortality Estimated numbers (thousands) Incidence 2008 2030* 0 200 400 600 800 1,000 Total * Assuming cervical cancer rates in 2008 do not change

Trends in cervical cancer incidence in selected countries Age-standardised rates per 100,000 Less developed regions More developed regions 70 70Al geri a Aus tri a(regi ona l )Bra zi l Bul ga ri a(regi ona l ) 60 60Chi na Czech(regi ona l ) Republ i cCol ombi a 50 50 Denma rk(regi ona l )Cos ta Ri ca Fi nl a ndEcua dor 40 40 Fra nce(regi ona l ) (regi ona l )Indi a Ital y(regi ona l ) 30 30 (regi ona l )Phi l i ppi nes Ja pa n(regi ona l ) (regi ona l )Sa udi NewAra bi a 20 20 Zea l a ndTha i l a nd Rus s i a n(regi ona l ) Federa tionUga nda 10 10 Uni ted(regi ona l ) Ki ngdomZi mba bwe USA(regi ona l ) (regi ona l ) 0 0 1977 1982 1987 1992 1997 2002 2007 1977 1982 1987 1992 1997 2002 2007 Rates have been smoothed using 3-year moving average Data sources: Cancer Incidence in Five Continents Vol. I to IX (CI5.iarc.fr) Cancer registry reports

Thailand, Chiang MaiMedium HDI China, Shanghai Philippines, Manila India, Mumbai India, Chennai China, Hong Kong Lithuania Latvia EstoniaHigh HDI Slovakia Poland, Kielce Poland, Cracow City Poland, Warsaw city Colombia, Cali Costa Rica Brazil, Goiania Ecuador, Quito Japan, Yamagata Prefecture Slovenia Iceland Finland Israel: JewsVery High HDI Spain, Granada Italy, Parma Canada, Alberta Canada, New Brunswick Italy, Modena USA, California, Los Angeles: Japanese USA, Louisiana, New Orleans: White Canada, Saskatchewan France, Tarn Spain, Murcia Japan, Miyagi Prefecture Italy, Florence Czech Republic France, Doubs Sweden USA, Georgia, Atlanta: White Spain, Navarra USA, California, Los Angeles: Filipino Canada, British Columbia Italy, Lombardy, Varese province USA, Hawaii Italy, Romagna USA, Iowa USA, Michigan, Detroit: White USA, California, Los Angeles: Non-Hispanic White Norway Canada, Nova Scotia USA, California, San Francisco: White France, Bas-Rhin The Netherlands, Eindhoven Canada, Ontario USA, Michigan, Detroit: Black USA, SEER (9 registries): White Germany, Saarland USA, California, Los Angeles: Hispanic White USA, SEER (9 registries) USA, Louisiana, New Orleans: Black USA, Connecticut: White USA, New Mexico Spain, Tarragona Switzerland, St Gall-Appenzell Spain, Zaragoza Canada, Manitoba Singapore: Chinese USA, Washington, Seattle USA, Utah UK, Scotland Italy, Torino France, Somme USA, SEER (9 registries): Black Denmark USA, Georgia, Atlanta: Black USA, California, Los Angeles: Korean Canada, Prince Edward Island Canada, Newfoundland France, Calvados France, Herault Italy, Ragusa Province USA, Connecticut: Black USA, California, Los Angeles: Chinese France, Haut-Rhin Australia, New South Wales Australia, Tasmania UK, England, North Western UK, England, Yorkshire Singapore: Malay USA, California, San Francisco: Black USA, California, Los Angeles: Black New Zealand Japan, Osaka Prefecture Austria, Tyrol UK, England, Birmingham and West Midlands Region Australia, Victoria Switzerland, Geneva Australia, Western France, Isere Australia, South UK, England, Merseyside and Cheshire UK, England, Oxford

Prediction of cervical cancer incidence and mortality Estimated numbers (thousands)Incidence290000 Incidence 2008 2030* 0 200 400 600 800 1,000 Total * Assuming cervical cancer rates in 2008 do not change

Prediction of cervical cancer incidence and mortality Estimated numbers (thousands) Incidence 2008 2030* 0 200 400 600 800 1,000 Total * Assuming global declines in cervix cancer of 2% per year

• Cervical cancer burden - EECARO and ASRO

Country - EECARO Country - ASROAlbania AlgeriaArmenia EgyptAzerbaijan JordanBelarus LebanonBosnia & Herzegovina MoroccoGeorgia SudanKazakhstan SyriaKyrgyzstan TunisiaRussian FederationSerbiaTajikistanTurkeyTurkmenistanUkraineUzbekistan

Cervix Cancer Estimates 2008, ages 0-74 Kyrgyzstan Serbia Kazakhstan Armenia Ukraine Morocco Russian Federation Belarus Uzbekistan Algeria AzerbaijanBosnia Herzegovena Tajikistan Sudan Turkmenistan Albania Tunisia Turkey Lebanon JordanSyrian Arab Republic Egypt Cumulative Risk of Incidence Cumulative Risk of Mortality 3 2 1 0 1 2 3

• Population-Based Cancer Registries (PBCR)

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

PBCR – basic requirements• Clear definition of the catchment population • Distinguish residents living within the area and those who come from outside• Availability of reliable population denominators• Generally available medical care and ready access to medical facilities • Great majority of cases will come into contact with the health care system at some point in their illness• Easy access to case-finding sources • Hospitals, pathology departments, death certificates etc.

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

Bias in Pathology SeriesFortaleza Cancer Registry NRTP Ceara State (Males) (Males) (1978-1980) (1976-1980) Stomach Stomach 15.4% 10.3% Lung Lung 1.0% 7.7%Others Others48.7% 47.8% Skin 20.0% Skin 36.0% Lymphoma Leukaemia 3.9% Leukaemia Lymphoma 4.3% 0.8% 4.1%

Bias in Hospital Based SeriesBombay Cancer Registry Tata Memorial Hospital (Males) (Males) (1968-1972) (1970-1972) Mouth/Pharynx Mouth/Pharynx 25.7% 49.0% OthersOthers 41.8%50.3% Stomach 5.7% Larynx Lung 9.4% Lung Stomach 8.9% 5.7% Larynx 1.7% 1.8%

Planning for a PBCR – key requirements• Advisory committee • Seek cooperation / support of medical community. • Representatives of funder(s), sources and users of data• Population denominators • Accurate, regularly-published population data.• Legal aspects and confidentiality• Size of population and number of cases • Decide on optimal size of the population covered by the registry.• Physical location of the registry• Finance • Dependant on size of area, data items collected, different sources etc.• Personnel • Leadership of PBCR Director. • Necessity of adequate staffing, expertise and training• Equipment (IT - linkage of sources) / office space

Difficulties in Low/Medium resource countries• Lack of resources • Lack of appropriately-trained staff• Lack of basic health facilities• Lack of proper denominators• Identity of individuals• Lack of follow-up

INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES Membership 662 25 264 447 458 402 19 19 385 366 19 18 20 187 186 104 Oceania 163 171 144 Europe 75 191 68 67N. America 15 68 134 70 48 91 46S. America 91 11 83 40 137 38 55 28 92 Asia 7 87 39 54 68 74 37 59 Africa 26 12 12 16 57 88 3 12 24 28 30 42 44 7 11 1979 1982 1986 1992 1996 1997 2002 2003 2008

Coverage of cancer registration worldwide% of the population covered (around 2000) 40.0 99.0 19.0 7.1 7.9 13.0 82.0 16.5% total (21% in 2006 - 8% in Asia )

Cancer Incidence in Five Continents % population covered by cancer registries in Vol. IX(number of registries/number of countries providing data) 83.0 32.5 (100/29) (54/2) 4.0 (44/15) 1.1 (5/5) 5.5 (11/7) 80.5 (11/2) 11.6 total (225/60)

GLOBOCAN 2008: Incidence, methods of estimation National Incidence data (62 of 182 countries, 34%) Regional incidence (+ mortality) and national mortality (52, 29%) Regional incidence data only (23, 13%) Frequency data (13, 7%) No data (32, 18%)

Cancer registries as a basis for cancer prevention and control1) Epidemiology • Generating hypotheses of aetiology – geographic and temporal variations in cancer incidence • Understanding aetiology and evaluating interventions - case identification, research endpoints e.g. in cohort studies2) Cancer control programmes • Planning • estimates of cancer burden (incidence, mortality, survival) • targeting public health interventions • Evaluating – temporal variations in incidence, survival and mortality

Incidence and mortality data availability - EECARO Included MortalityCountry Cancer Registry? in CI5? (WHO)? Compl.Albania N N/A Y 58%Azerbaijan N N/A Y 71%Armenia N N/A YBelarus National PBCR Y Y 100%Bosnia & Herzegovina N N/A Y 100%Georgia N N/A Y 85%Kazakhstan N N/A Y 89%Kyrgyzstan N N/A Y 89%Russian Federation (National) PBCR Y Y 100%Serbia National PBCR N Y 100%Tajikistan N N/A Y 60%Turkey Regional PBCR Y YTurkmenistan N N/A Y 81%Ukraine National PBCR N Y 100%Uzbekistan N N/A Y 91%

Incidence and mortality data availability - ASRO Included MortalityCountry Cancer Registry? in CI5? (WHO)? Compl.Algeria Regional PBCR Y NEgypt Regional PBCR Y Y 85%Jordan National PBCR N YLebanon Regional CR N NMorocco Regional CR N NSudan Regional CR N NSyria N N/A YTunisia Regional PBCR Y N

• Future collaborative developments

http://www.who.int/hpvcentre/en/

Provision of support to countries monitoring cervical cancer burden in relation to the introduction the HPV vaccine - activities using cancer registriesCountry-specific fact sheets/reports:• situation analysis of cancer burden 2010• info/contacts: data sources, availability, quality of key indicators of burdenTechnical advice to planners• guide to establishing / improving PBCR• measuring impact of the HPV vaccine / screening programmes using PBCRCollaborative research• highlight patterns and trends in cervical cancer in LMIC vs. HIC countries• alert planners to the necessity of population-based data to monitor the cervical cancer burden in LMIC.

Conclusions• The estimated 529 000 new cases of cervical cancer in 2008 will increase to over 800 000 by 2030 assuming no change in rates.• Cervix cancer incidence and mortality rates are decreasing in many medium/high resource settings • 2% declines worldwide would see numbers remain stable - but rates increasing in a number of lower & higher resource settings.• Regions with relatively high increasing risk include a number of Eastern European / Central Asian countries.• PBCR is an essential component of cancer control activities but their extent and quality still remains limited.• Positioning NCDs at the top of the global health agenda.. • ..will hopefully ameliorate the situation with respect to the availability of cancer statistics on cervical cancer aiding the planning and evaluation of targeted prevention and early detection strategies.

Regional Figures on Cervical Cancer and Cancer Registries by Freddie Bray

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