The European Cancer Observatory: A new data resource.

European Journal of Cancer (2014) xxx, xxx– xxx

Available at www.sciencedirect.com

ScienceDirect journal homepage: www.ejcancer.com

The European Cancer Observatory: A new data resource Eva Steliarova-Foucher a,⇑, Mark O’Callaghan b, Jacques Ferlay a, Eric Masuyer a, Stefano Rosso c, David Forman a, Freddie Bray a, Harry Comber b a

Section of Cancer Information, International Agency for Research on Cancer, Lyon, France National Cancer Registry, Cork, Ireland c Piedmont Cancer Registry – CPO Piedmont Reference Centre for Epidemiology and Cancer Prevention, Turin, Italy b

KEYWORDS Cancer Registry Incidence Mortality Prevalence Survival Europe Estimates Website

Abstract Population-based cancer registries provide indispensable information on cancer incidence and survival, which cannot be obtained by any other means. It is clear that complete and effective use of these data is essential for cancer control, but sharing this information in a uniform, timely and user-friendly manner has been somewhat limited up to now. The European Cancer Observatory (ECO, http://eco.iarc.fr) has been developed in the framework of the EUROCOURSE project (EUROpe against Cancer: Optimisation of Use of Registries for Scientific Excellence in Research) as a comprehensive resource combining all the information currently available in Europe on cancer incidence, mortality, survival and prevalence. The website provides analytical and presentation tools to examine national estimates for 2012 in 40 European countries (EUCAN), data for 130 national or sub-national areas covered by cancer registries for up to 60 years, until 2011 (EUREG) and a planned mechanism for data download (European Cancer Incidence and Mortality (EUROCIM)). The generated statistics outline the considerable variability across Europe in the rates of all major cancer types and help identify key concerns that need to be addressed by public health policies e.g. the unprecedented rise of lung cancer incidence in women with its full impact expected within a decade or so. The support, maintenance and further development of the ECO website should be a high priority for European cancer policymakers, to continue providing this unique information to health professionals, researchers and the general public in Europe and beyond. Ó 2014 Published by Elsevier Ltd.

⇑ Corresponding author: Address: Section of Cancer Information, International Agency for Research on Cancer, 150, cours Albert-Thomas, 69372 Lyon Cedex 8, France. Tel.: +33 (0)4 72 73 84 66 (direct)/85; fax: +33 (0)4 72 73 80 22. E-mail addresses: [email protected] (E. Steliarova-Foucher), [email protected] (M. O’Callaghan), [email protected] (J. Ferlay), masuyer@ iarc.fr (E. Masuyer), [email protected] (S. Rosso), [email protected] (D. Forman), [email protected] (F. Bray), [email protected] (H. Comber).

http://dx.doi.org/10.1016/j.ejca.2014.01.027 0959-8049/Ó 2014 Published by Elsevier Ltd.

Please cite this article in press as: Steliarova-Foucher E. et al., The European Cancer Observatory: A new data resource, Eur J Cancer (2014), http://dx.doi.org/10.1016/j.ejca.2014.01.027

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E. Steliarova-Foucher et al. / European Journal of Cancer xxx (2014) xxx–xxx

1. Introduction The World Health Organisation has stated that ‘in any effective cancer control plan, cancer control priorities and programmes are driven by available data on the cancer needs in the general population’ and that ‘the optimal resources for determining the cancer burden are well organised population-based cancer registries that provide data on incidence and survival; and good quality mortality statistics’ [1]. Collaborations and comparisons between European registries have provided countries and regions with benchmarks for cancer control and have been essential in developing the quality of registration. The European Network of Cancer Registries (ENCR, http://www.encr.com.fr/) was established in 1990 and was jointly funded by the European Union, under the Europe Against Cancer Programme, and the International Agency for Research on Cancer (IARC). The objectives of ENCR (Box 1) have been achieved through collaborative activities—the development of data and coding standards, database development, training, mentorship tools for registries, communication forums and estimates of cancer burden in Europe [2–9]. As part of the EUROCOURSE project [10] the European Cancer Observatory (ECO, http://eco.iarc.fr) has been developed in collaboration between IARC and 130 ENCR member registries. The Observatory builds on multiple data sources and consists of three websites—EUCAN, EUREG and European Cancer Incidence and Mortality (EUROCIM). ECO provides an innovative and comprehensive window on cancer incidence, mortality, prevalence and survival for Europe as a whole and for individual countries and registries. 2. Methods 2.1. Data sources A dedicated working group developed the ENCR Call for data, which was released in May 2010 to all European cancer registries (available at http:// www.encr.com.fr/DownloadFiles/ENCR_Call.pdf). The ENCR Call remains active as a standing request to the ENCR member registries to submit their data on a Box 1 The objectives of the European Network of Cancer Registries (ENCR). To improve the quality, comparability and availability of cancer incidence data To create a basis for monitoring cancer incidence and mortality in the European Union To provide regular information on the burden of cancer in Europe To promote the use of cancer registries in cancer control, health-care planning and research

regular basis, preferably once a year. The requirements of the Call address also the needs of other international studies, including EUROCARE (http://www.eurocare.it/), Cancer Incidence in Five Continents (http:// ci5.iarc.fr/), International Incidence of Childhood Cancer (http://iicc.iarc.fr/), ACCIS (http://accis.iarc.fr/) and could potentially address others. The Call describes the required files, their layout and content. The cancer cases file contains 45 variables coded according to a defined scheme, and includes variables on patients (age, sex, date of birth, country/region of residence), their cancer (date of incidence, topography, morphology, behaviour, grade, stage at diagnosis), treatment and the outcome (date of end of follow-up, vital status and survival time). The registries are asked to provide the required information for as long a time period as possible. The submitted datasets contain anonymous records and comply with the data confidentiality requirements of the data providers. Other required files are population data, official cancer mortality statistics and a description of the data sources. Mortality data are mainly extracted by registries from their national or regional official statistics publications or databases; a few registries produced their own mortality data. As the revision of the International Classification of Disease used to classify causes of death varied by country and period, all causes of death were converted to International Classification of Disease (ICD)-10 [11] for presentation in EUREG. Such conversion might have caused distortion of past rates for particular cancer sites, namely colorectal, liver and lung, where these were originally coded to one of the previous ICD revisions. The conversion of certain sites from ICD-9 to ICD-10 in France and Switzerland might have also affected the rates’ comparability over time [12,13]. The sources of mortality and population data are listed on the website, with a link to the relevant data source where available.

2.2. Data flow and processing As part of the EUROCOURSE project, the IARC, in collaboration with the National Cancer Registry Ireland, has developed the Registries Portal (https://cinportal.iarc.fr/), which includes a mechanism of automatic management of data flow between the cancer registries and the coordinating centre. As a general rule, the Call for data is opened to all ENCR member registries. At the date of the Call release, 191 cancer registries were invited to contribute. To automate data processing, each cancer registry was requested to submit their data through the Registries Portal using a registry-specific identification code and password. The submitted data are processed and checked at IARC using in-house automatic routines based on standard data quality measures [14]. Inconsistencies in the data



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Fig. 1. European Cancer Observatory: data sources and data flow.

are referred back to the cancer registries which could correct or confirm these. Out of over 26 million submitted records of incident cancer, 3 million were sent back to the registries for corrections or verification. The corrected datasets were all included in the Common Database without further quality assessment of the datasets. After exclusion of erroneous records and records of non-malignant tumours, the Common Database currently contains over 24 million records of incident cancer cases, as well as aggregated population, mortality and survival data. Data flow is illustrated in Fig. 1. 2.3. EUREG, registry data To display the assembled data online, the Common Database is regularly uploaded to the EUREG database, as the individual registries renew their submissions. The EUREG database consists of several tables. Cancer incidence and mortality data are aggregated by registry, calendar year, sex, 5-year age group and 40 major cancer sites (including a total for all sites combined) defined by the ICD-10 [11] codes. Certain nonmalignant tumours are also included (coded to ICD-10 as D33, D43 and D45–D47). Corresponding population data are grouped by registry, calendar year, sex and 5-year age group. Survival data were extracted from the reports published by the EUROCARE study group [15–18]. Because of different definitions of cancer groups, groups of registries, time periods and age groups within the EUROCARE publications, survival is presented for only a subset of all available combinations of variables.

The statistics generated in EUREG represent ‘observed’ data from the cancer registries, so no information is available for countries or regions not fully covered by a cancer registry. The results are presented in dynamically created tables and graphs, which can be customised, printed and exported. The underlying data can also be exported for further analyses. The user can explore geographical patterns, age- and sex-specific rates (and for both sexes combined), as well as timetrends in incidence, mortality and survival. The user can create a personal space on the EUREG website, to define groups of registries, time periods or cancer sites, to save the parameters of commonly used selections or to save graph settings for re-use during a different session. The website provides information on composition of the EUREG database and its updates, the data sources, definitions of the 40 available cancer sites, glossary of technical terms used and frequently asked questions. 2.4. EUCAN, national estimates EUCAN provides national estimates of cancer incidence and mortality in 2012 for 25 major cancer groups (including the category of ‘all sites except non-melanoma skin cancer’) in 40 individual countries constituting the United Nations European region [19]. Aggregate figures for Europe (the 40 countries combined) and the European Union 27 member states are also provided.1 These estimates are based on the cancer incidence data 1 Croatia joined the European Union (EU) in 2013 as a 28th member state, so this country is not included in the 2012 estimates for the EU.


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Fig. 2. Estimated number of cases, deaths and five-year prevalence for all cancer sites excluding non-melanoma skin cancer in Europe, 2012. Source: EUCAN.

published or provided by registries for EUREG, as well as official cancer mortality data from a number of sources and were derived using the methodology of Ferlay and colleagues [20]. In addition, 1, 3 and 5-year prevalence estimates are provided for 2012 for the same geographical and tumour entities, using the method of Bray et al. [21]. EUCAN estimates of national cancer incidence may differ from those produced by individual countries due to different methodologies and different data availability at the time of estimation. The links to the national estimates (where relevant) are provided on the website. EUCAN information is presented in two types of factsheet. ‘Cancer factsheets’ provide comparisons of numbers and age-standardised rates for incidence and mortality, and of number of prevalent cases and prevalence estimates, in all countries displayed simultaneously, using interactive bar charts, tables or maps for a selected cancer site (or all sites combined). ‘Country factsheets’ provide equivalent statistics, for each of the 40 countries (and for the EU27 and 40 countries combined), with all cancer sites presented simultaneously. All data and images can be exported and saved in a number of formats. EUCAN also provides links to data sources and a glossary of terms to guide the user.

tracking of the data use by the providing cancer registries. Upon approval (if required), incidence, mortality and population datasets will be created according to the user-defined specifications. The content of the EUROCIM database will depend on the permissions granted by the cancer registries and will affect the degree of data aggregation or the type of data items available. A survey of cancer registries was carried out to establish their preferences for data sharing and the conditions for data release. The survey was performed using a questionnaire administered through the Registries Portal in 2011 and was available to almost 200 European cancer registries. The questionnaire was in two sections: the first on sharing of grouped data and the second on sharing of anonymous individual data. The results of the questionnaire indicate the extent and detail of data that could be made available to interested researchers. User registration will be mandatory for EUROCIM. Individual registries will have considerable flexibility in specifying the conditions for data release—from allowing unrestricted use of their data to scrutinising each individual data request. These permissions will be processed semi-automatically through the Registries Portal. 3. Results

2.5. EUROCIM, downloadable data

The European Cancer Observatory was built to provide three interfaces to the cancer data in Europe— EUCAN, EUREG and EUROCIM. Some of the observed patterns are described below as illustrations of how this new data resource can generate information that could lead to important modifications of policy in the field of public health. Based on the EUCAN estimates, more than 3.4 million new cases of cancer (excluding non-melanoma skin cancer) were diagnosed in Europe in 2012; almost 80% of them in the European Union (Fig. 2). The commonest cancers were those of breast, large bowel, prostate and lung, all of which represented more than 1.7 million cases annually (Fig. 3). The cancer with the largest

EUROCIM (European Cancer Incidence and Mortality) is a planned extension to ECO, which will provide predefined access to a database of cancer records. The principal functionality of the website will be the extraction of data from the EUROCIM database to a file. In addition, maps and charts of a ‘database dashboard’ will allow the user to see exactly what data are available for download, and to preview relevant variables in the file of cancer records for the selected cancer registry. A ‘quick search’ facility will allow the user to define a dataset by selecting the variables, such as registry, calendar period, age, sex, tumour type, TNM staging, treatment, vital status, etc. and their values. Finally, a validation procedure will be launched where indicated, to facilitate

Fig. 3. The most common cancers in Europe 2012 (40 countries): estimated number of cases, deaths and five-year prevalence. Source: EUCAN.



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Fig. 4. Estimated incidence of all cancers excluding non-melanoma skin, females, Europe 2012. Source: EUCAN.

number of incident and prevalent cases was breast cancer, while by far the largest number of deaths was due to lung cancer. For women, there was a clear southeast-northwest gradient in incidence of all cancers (Fig. 4) with the highest incidence in Denmark (European age-standardised rate, ASR(E) 454 per 100,000) and the lowest in Greece (ASR(E) 192 per 100,000). There was a similar but less consistent pattern for males (Fig. 5) with the highest incidence in France (ASR(E) 551 per 100,000) and the lowest in Bosnia-Herzegovina (ASR(E) 254 per 100,000). A comprehensive overview of cancer patterns in Europe is provided elsewhere [20]. Currently, the EUREG database contains records from 130 European cancer registries (Box 2). The period of coverage for each statistic shown in Box 2 is determined by the inherent limitations of different data sources in the individual cancer registries. The countries and regions covered by cancer registries contributing to EUREG are shown in Fig. 6. Data from EUREG have shown varying trends in cancer incidence across Europe for both tobacco related [22] and non-tobacco-related cancers [23]. Another example of EUREG data use is demonstrated in Fig. 7 which shows changing cohort patterns in lung cancer incidence. In the late 1980s, the incidence of lung cancer in males was similar in Spain and the Nordic countries; however lung cancer reduced

in the Nordic region over the following 15 years, but not in Spain, which now has a lung cancer incidence in men which is 60% higher than in the Nordic countries (ASR(E) 77.5 versus 48.5 per 100,000 in period 2001–2005), and the rates surpass those seen in the Nordic countries at the start of the period, in age cohorts 50–54 and older. The figures however suggest the start of a downward trend in both populations, especially in younger cohorts. In women, lung cancer incidence in Nordic countries rose almost to the level of the rate in men (ASR(E) 30 versus 48 per 100,000 in period 2003–2007) and for the younger cohorts, up to and including those 50–54 years old, it actually surpasses the equivalent rates in men. At the beginning of the index period, lung cancer incidence in women was about 4-times lower in Spain than in the Nordic countries. However while incidence has increased by about 50% in the Nordic countries, it has doubled in Spain. Despite the overall lung cancer incidence rates being still relatively low, the steeply rising incidence rates in the young cohorts suggest that Spanish women are heading towards equally high rates as those seen in the women of Nordic countries. Mortality rates reflect a combination of incidence and survival patterns. For 2003–2007 the truncated breast cancer mortality rate (for the women aged 30 years or more) was highest in the West (43.5 per 100,000) and lowest in the East (40.1). The rates dropped by 22% over


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Fig. 5. Estimated incidence of all cancers excluding non-melanoma skin, males, Europe 2012. Source: EUCAN.

Box 2 The EUREG database content.

Number of registries contributing Median period contributed (years) Shortest period (years) Longest period (years) Earliest start year Latest start year Earliest end year Latest end year

Incidence

Mortality

Survival

130 14 1 55 1953 2008 2001 2010

108 12 0 60 1951 2007 2001 2011

21 10 0 22 1978 1995 1994 1999

the period 1988–2007 in Europe in women of 30 years and over. The overall tendency was different in Eastern Europe (represented by Estonia and Slovakia), where the mortality rates rose by about 3%. Fig. 8 shows that breast cancer mortality was declining in Northern and Western Europe in all age groups, including those not covered by mammography screening. The mortality was rising in Southern Europe in women aged 80 years and over (by 0.8% per year) and in Eastern Europe in women of 60 years and over (0.9% per year), and the rate of increase accelerated with increasing age. One prerequisite of the EUROCIM website is the registries’ willingness to share the data. The survey on access to data was completed by 93 registries of almost 200 operating in Europe. Among respondents 84 were

general population-based registries and nine were specialised in registration of selected cancer sites. Fig. 9 shows the responses on sharing grouped data. Most registries (70%) were willing to share grouped data with other members of ENCR through a controlled mechanism. A significant minority (28%) would agree to share data with any interested user through a free-access website. Sex, age (years), year of incidence, topography and morphology group of tumour were the variables which most (>90%) registries could make available. The majority (70–80%) could also share information on basis of diagnosis and vital status. Registries were much less willing to share data on stage at diagnosis, probably because of the incompleteness of this type of information [24]. Responses were similar with regard to sharing of anonymous individual data (Fig. 9), although few registries (6.5%) were willing to share data with any interested user through a free-access website. As with grouped data, most (over 90%) would make available information on sex, age, date of incidence (month and year), date of birth (only year), sequence number of tumour, topography, morphology and behaviour of tumour, and basis of diagnosis available. Information useful for survival calculation (vital status, date of follow-up, and cause of death) would be shared by between 65% and 80%, while information on stage and treatment received fewer preferences (Fig. 10).



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Fig. 6. Map of Europe showing the geographical areas covered by the population-based cancer registries contributing to the EUREG website.

Comments received with the questionnaire covered three main areas: 1. Concerns (and calls for reassurance) about mechanisms for avoiding disclosure of anonymity and preserving confidentiality of data. 2. The need for clarification of authorship criteria. 3. The need for approval of data release mechanism.

4. Discussion A key requirement of data users is that cancer data should be timely (data not shown). However, registries currently do not collect data in real time, as ascertainment of all incident cases and validating of all data items, takes time. For example, in the United Kingdom (UK) it is recommended that case ascertainment should be complete within 18 months of a year end and the Northern American Association of Central Cancer Registries (NAACCR) outlined a target of 23 months (http://naaccr.org/Certification/CertificationLevels.aspx), but many registries across Europe cannot reach such targets at

present. One answer to the requirement of timeliness is EUCAN, where estimates are provided for 2012, while most registries are still busy completing the calendar years ended between 1 and 5 years earlier. EUCAN is very useful for showing country-specific data and broad geographical patterns. Regular updates of the EUCAN estimates are envisaged. However, EUCAN estimates are based on past trends [20,21,25,26] and cannot reflect rapid changes (although these tend to be rather rare for cancer). Observed data can be provided in a more timely way by reducing to a minimum the time between completion of a calendar year’s registrations by a registry and availability of the data on-line. Central to the concept of a European Cancer Observatory has been the development of a mechanism which enables registries and the coordinating centre to add data to the EUREG database as rapidly and efficiently as possible. Registries can now upload data annually, or at any time, and the partial automation of the submission, feedback process and the Common Database construction makes it possible to release the data almost immediately after the submission, provided that they comply with the data quality requirements.


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Fig. 7. Lung cancer incidence by birth cohort: Nordic countries and Spain. Source: EUREG.

As most calculations are carried out automatically on the website, this can give users access to the timeliest possible incidence and mortality data at all times. This is a major advance on the previous system of irregular data calls and labour-intensive data processing and feedback

within ENCR. Using the Registries Portal, registries can also authorise the use of their data in other projects and collaborations, which is often faster and more efficient than having to submit a dataset separately to each project. There is unlimited potential for additional data



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Fig. 8. Breast cancer mortality by age group in Europe. Each region is represented by all the registries in the relevant countries contributing data for the entire period 1988–2007. Eastern Europe—Estonia and Slovakia; Northern Europe—Denmark, Finland, Iceland, Norway, Sweden, UK (Scotland); Southern Europe—Italy (Modena, Parma, Romagna, Turin, Varese), Slovenia, Spain (Girona, Granada, Murcia, Navarra); Western Europe—Austria (Tyrol), Germany (Saarland), Switzerland (Geneva, Graubunden & Glarus, Neuchatel, St Gallen Appenzel, Vaud). Source: EUREG.


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Fig. 9. Responses obtained from 93 respondents during the Survey of registries to the following question (multiple answers apply): Would you be willing to share anonymous or grouped data in the following ways?

Fig. 10. Responses received from 51 respondents during the Survey of registries to the following question (multiple answers apply): would the following data items be available from your registry for anonymised data?

items, linkage between different sources of data and innovative methods of on-line data analysis and presentation. EUCAN provides national estimates of incidence, mortality and prevalence, including for those countries where cancer registries do not cover the entire population or where cancer registries do not operate. It was designed for users who want a rapid and comprehensive overview of current status for a particular country or cancer site. EUCAN data are estimates and may therefore differ from data observed in relevant cancer registries. In contrast, EUREG provides access to incidence and other data assembled by the population-based cancer registries across Europe. EUREG is flexible and designed for access by a wide range of users, but requires some knowledge of cancer registration and epidemiology in comparison with EUCAN.

However, the current system has a number of limitations. Data collection by registries is quite heterogeneous. While many standards for cancer registration have been published in Europe [3], their implementation is variable and new standards continually need to be developed to reflect changes in diagnostic methods, molecular research, clinical management, patient pathways and electronic data processing. Standards must be disseminated and adopted through initiatives in training, staff exchanges and publications; and incentives and support for registries provided locally and at European level to adhere to the standards. A second limitation is that datasets contained in the EUREG database are not examined in detail for quality and comparability, in contrast to the editorial process for Cancer Incidence in Five Continents [27]. There will always necessarily have to be compromises between



detailed data checking and early availability on-line, but the development of a centralised database must be accompanied by the provision of dedicated resources to carry out this detailed review and to provide assurance of the data quality and comparability to users across Europe. The EUREG data are also limited in geographical coverage; almost half of the general European population is outside the coverage of cancer registration. To provide more reliable data, registration must be initiated in countries where it does not currently exist and subnational coverage extended to national level. The existence of such data would also improve the reliability of the short and long-term predictions in EUCAN. Finally, the survival data currently shown are not available for many registry areas, tumours, age groups and time periods. Interactive survival statistics require different software and given the heterogeneity of the datasets and the lack of resources, such development is currently not an option. However, in near future it is planned to add results of survival analyses for many more cancers, registries, periods and age groups to the ECO website, in collaboration with the EUROCARE working group. Research datasets cannot be downloaded from EUROCIM as yet; this part of the ECO web site will be finalised when sufficient resources become available. The European Commission has agreed to invest in ENCR infrastructure and to disseminate European cancer data [28]. The results of the registry survey on data sharing show that a third of all registries are reserved with respect to a policy of widespread sharing and availability of their detailed data, and although the benefits of this for registries and the wider research community are evident, the limitations that many registries face in terms of funding or data accessibility may make it difficult to share their data. The continued use of EUREG for cancer control on European level, as well as the support to cancer registries, will help to modify the registries’ capacity to share their data through this platform. Nevertheless, the ECO website, together with the underlying mechanism of data processing, already forms the nucleus of a Europe-wide cancer information system, as envisaged in the EUROCOURSE project (www.eurocourse.org). Further development of ECO to provide a cancer intelligence network (as suggested by the European Partnership for Action Against Cancer) may require the unification of cancer burden indicators (incidence, mortality, survival and prevalence) drawn from many sources [29]. The progress will depend on the continuing efforts and goodwill of the participating registries and their sponsors, as well as a secure and continuing source of funding for the coordination of European activities.

5. Conclusion The European Cancer Observatory provides a new integrated window on European cancer data and pro-

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vides key statistics on the cancer burden relevant to health professionals and researchers. Up-to-date information on cancer burden, which is relevant to all fields of cancer research and public health, is now readily available at national level for all countries in Europe. Registry data on incidence, mortality, survival and prevalence in Europe are presented in a standard and freely accessible way, with simple analytical tools and easy-touse tables and graphs. The ECO website shows the potential of European cancer data for planning and research, and provides a clear pathway for the development of an ever more comprehensive and sophisticated European cancer intelligence network. One example is the observation of the rapid escalation of lung cancer incidence (and ensuing mortality) in female populations across Europe, which is notable in younger age groups at present and will show a material impact on overall rates in the decades to follow. This is a clear message that tobacco control must become a priority action that targets the female population. With the provision of data generated by the European cancer registries through the European Cancer Observatory, many such vital geographical and temporal patterns will direct cancer control in Europe. Funding and role of the funding source The research leading to these results has received funding from the European Union’s Seventh Framework Programme (FP7/2007–2013) under Grant agreement n. LSSH–CT–2008–21 9453 (EUROCOURSE). There was no intervention of the funds provider as to any aspect of the conduct of the study or results interpretation. Conflict of interest statement None declared. Acknowledgements The map showing the geographical coverage of Europe by the contributing cancer registries was drawn at IARC by Abdoul Sy and Murielle Colombet. The ECO website would not exist without the data and the support provided by the ENCR member registries. The efforts of all their staff over long years are invaluable in making the European cancer data available to the community. The following cancer registries contributed their data: Austrian Cancer Registry, Landes Salzburg Tumor Registry and Tyrol Cancer Registry (Austria), Belgian Cancer Registry and Flemish Cancer Registry Network (Belgium), Bulgarian National Cancer Registry (Bulgaria), Croatian National Cancer Registry (Croatia), Cyprus Cancer Registry (Cyprus), Czech National


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Cancer Registry (Czech Republic), Danish Cancer Registry (Denmark), Estonian Cancer Registry (Estonia), Cancer Society of Finland and Finnish Cancer Registry (Finland), Doubs Cancer Registry, Herault Cancer Registry, Isere Cancer Registry, Pays de la Loire Cancer Registry, Manche Cancer Registry, Lille area Cancer Registry, Haut-Rhin Cancer Registry, Somme Cancer Registry, Tarn Cancer Registry, Calvados Registry of Digestfig. 9ive Tumours, Finistere Registry of Digestive Tumours, Cote d’Or Hemopathy Registry, Lower Normandy Hemopathy Registry (France), Cancer Registry Bavaria, Munich Cancer Registry, Berlin Cancer Registry, Brandenburg Cancer Registry, Mecklenburg-Western Pomerania Cancer Registry, Bremen Cancer Registry, Free state of Saxony Cancer Registry, Saxony-Anhalt Cancer Registry, Thu¨ringen Cancer Registry, Hamburg Cancer Registry, Cancer Registry of Rheinland-Palatinate, Epidemiological Cancer Registry North Rhine-Westphalia, Saarland Cancer Registry, Lower Saxony Cancer Registry, Schleswig-Holstein Cancer Registry (Germany), Gibraltar Cancer Registry (Gibraltar), Icelandic Cancer Registry (Iceland), National Cancer Registry Ireland (Ireland), Cancer Registry of the Province of Biella, Cancer Registry of Brescia, Integrated Cancer Registry of Catania-Messina-SiracusaEnna, Catanzaro Tumor Registry, Cancer Registry of Como province, Reggio Emilia Province Tumor Registry, Ferrara Province Cancer Registry, North East of Italy Cancer Surveillance Network—Friuli Venezia Giulia, Liguria Region Tumor Registry, Latina Province Cancer Registry, Lecco Cancer Registry, Cancer Registry of South Lombardy, Macerata Province Tumor Registry, Mantova Cancer Registry, Milano Tumor Registry, Tumour Registry of Modena, Cancer Registry of the Campania Region, Nuoro Cancer Registry, Palermo Province Cancer Registry (PPCR), Parma Cancer Registry, Ragusa Cancer Registry, Romagna Tumor Registry, Salerno Province Tumor Registry, Sassari Province Tumor Registry, Siracusa Province Cancer Registry, Sondrio Province Tumor Registry, Trento Cancer Registry, Trapani Cancer Registry, Piedmont Torino City Tumor Registry, Tuscany Region Tumor Registry, South Tyrol Cancer Registry, Umbrian Tumor Registry, Lombardy Cancer Registry, Varese Province, Veneto Tumor Registry, Breast Cancer Registry Palermo, Mesothelioma Registry of the Liguria Region (Italy), Latvian Cancer Registry (Latvia), Lithuanian Cancer Registry (Lithuania), Malta National Cancer Registry (Malta), Netherlands Cancer Registry, Comprehensive Cancer Centre South (Netherlands), Cancer Registry of Norway (Norway), Cracow City and District Cancer Registry, Kielce Regional Cancer Registry, Lower Silesian Cancer Registry, Rzeszow Regional Cancer Registry (Poland), Azores Cancer Registry, Portugal Central Region Cancer Registry, North Region Cancer Registry of Portugal, Portugal South Region Cancer Registry (Portugal), Cluj Regional Cancer

Registry, Timisoara Regional Cancer Registry (Romania), San Marino Cancer Registry (San Marino), Central Serbia Cancer Registry (Serbia), Slovakia National Cancer Registry (Slovakia), Cancer Registry of Republic of Slovenia (Slovenia), Albacete Cancer Registry, Asturias Cancer Registry, Mallorca Cancer Registry, Basque Country Cancer Registry, Cuenca Cancer Registry, Girona Cancer Registry, Granada Cancer Registry, Murcia Cancer Registry, Navarra Cancer Registry, La Rioja Cancer Registry, Tarragona Cancer Registry (Spain), Swedish Cancer Registry (Sweden), Geneva Cancer Registry, Graubu¨nden and Glarus Cancer Registry, Neuchatel Cancer Registry, St. Gallen-Appenzell Cancer Registry, Ticino Cancer Registry, Vaud Cancer Registry, Zu¨rich and Zug Cantons Cancer Registry (Switzerland), National Cancer Registry of Ukraine (Ukraine), Eastern Cancer Registration and Information Centre, North West Cancer Intelligence Service, Northern and Yorkshire Cancer Registry and Information Service, National Cancer Registration Service (Oxford), South West Cancer Intelligence Service, Thames Cancer Registry, Trent Cancer Registry, West Midlands Cancer Intelligence Unit, Northern Ireland Cancer Registry, Scottish Cancer Registry, Welsh Cancer Intelligence and Surveillance Unit (UK). References [1] World Health Organization. Cancer control: knowledge into action: WHO guide for effective programmes. Geneva, Switzerland: World Health Organization; 2006. [2] Este`ve J, Kricker A, Ferlay J, Parkin DM. Facts and figures of cancer in the European Community. International Agency for Research on Cancer; 1993. Available from: http://telescan.nki.nl/ iarc.html. [7/3/2013]. [3] Tyczynski JE, De´maret E, Parkin DM. Standards and guidelines for cancer registration in Europe. The ENCR recommendations. IARC technical publication no.40. Lyon: International Agency for Research on Cancer; 2003. [4] Ferlay J, Parkin DM, Steliarova-Foucher E. Estimates of cancer incidence and mortality in Europe in 2008. Eur J Cancer 2010;46(4):765–81. [5] Ferlay J, Autier P, Boniol M, Heanue M, Colombet M, Boyle P. Estimates of the cancer incidence and mortality in Europe, 2006. Ann Oncol 2007;18(3):581–92. [6] Boyle P, Ferlay J. Cancer incidence and mortality in Europe, 2004. Ann Oncol 2005;16(3):481–8. [7] Bray F, Sankila R, Ferlay J, Parkin DM. Estimates of cancer incidence and mortality in Europe in 1995. Eur J Cancer 2002;38:99–166. [8] Black RJ, Bray F, Ferlay J, Parkin DM. Cancer incidence and mortality in the European Union: cancer registry data and estimates of national incidence for 1990. Eur J Cancer 1997;33:1075–107. [9] Jensen OM, Esteve J, Møller H, Renard H. Cancer in the European Community and its member states. Eur J Cancer 1990;26:1167–256. [10] Coebergh et al. EUROCOURSE; this issue. [11] World Health Organization. International statistical classification of diseases and related health problems. 10th revision. Geneva, Switzerland: World Health Organization; 1992.


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