EUGLOREH project




5.3. Cancer

5.3.2 Data sources

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5.3.2 Data sources Cancer Registration


Population-based cancer registries (CR) collect data on all new cases of cancer occurring in a well-defined population, with the goal of improving cancer control. Today, 15 of the EU-27 Member States (MSs) have national cancer registration coverage, while in other countries regional CRs cover up to 30% of the national population. However in Europe some Member States do not have yet an European recognised cancer registry (Luxembourg, Greece, Romania, Hungary). Various bodies provide national, regional and Europe-wide coordination.


Cancer Registry roles and functions (Zanetti and Primic-Zakelj, 2007)


Unlike other communicable diseases, registration for cancer is not usually based on notifications by single clinicians, but it is run (where possible) via electronic notifications from several sources (e.g. district hospitals, cancer centres, hospices, private hospitals, screening registries, other CRs, primary care facilities, nursing homes and death certificates). Data refer to entire population covered by the CR and are frequently sent from different divisions (e.g. pathology departments, medical records and radiotherapy databases) within a single institution. The population level cancer patient data are becoming more and more useful for several reasons:


·          Measuring the burden and the public health impact of cancer: the minimal role of any cancer registry is the provision of timely and robust data on cancer incidence, survival (following up incident cases for a given time after diagnosis) and prevalence. ENCR has developed recommendations for the standard data set to be routinely recorded for all cancer patients. For those countries with regional coverage, statistical techniques are available by IARC and ENCR to obtain national estimates of cancer incidence from networks of regional registries. While European cancer survival figures are provided by the EUROCARE project (Capocaccia et al, 2003; Sant et al, 2003; Berrino et al, 2007)


·          Contributing to the evaluation of screening programmes: a number of EU cancer registries already contribute to the efficient evaluation of screening programmes. Others could do so by providing the following data:

-   early indicators: screen-detected incidence as a proportion of general population incidence, number of interval cases, follow-up of cases after migration or lapsed attendance to screening programmes;

-   impact indicators: down-staging of incident cases; reversal of initial prevalent wave of cases after screening introduction; trends in mortality among screened subjects and the general population.


·          Evaluating the impact of environmental and social factors on cancer risk and outcomes, and supporting investigations into the causes of cancer. For instance, thanks to cancer registration we know that:

-   mesothelioma is caused by exposure to asbestos;

-   lymphoma and oral cancer rates are higher in ethnic minorities;

-   cancer survival for patients living in poor areas is lower than for those living in rich areas; and


·          Evaluating the quality of cancer care by providing comparative data about treatment patterns and outcomes, access to treatment between social groups. To perform these studies additional data, such as details on treatment, quality of life, hospitalisation or cost per case have to be collected by CRs. They usually perform ad hoc studies on representative samples of registered cases.


·          Providing information in support of cancer genetic counselling services for individuals and families at higher risk of developing cancer. People are often worried that their family history may put them at high risk of cancer. The CR is often asked by clinical geneticists to confirm the details of a cancer diagnosis in a relative of someone attending their clinic.


Problems and possible solutions for Cancer Registration in the EU


About one hundred cancer registries operate in Europe today, playing a key role in public health, but not all the EU-27 Member States have national cancer registration coverage (see above). Yet in several EU Member States, severe constraints on registry operation have been imposed by statute laws or professional roll regulations. These constraints were intended to improve patient confidentiality, but in some cases they failed to take account of their impact on public health. As a consequence, several cancer registries closed down as in the former West Germany (1991), in the former East Germany (1991), in Hungary (1992); moreover, data protection  issues impacted on the flow of data to cancer registries also in  the UK (2000). In other cases registries are prevented from linking death certificates with cancer records. For example in Estonia, this has created a paradox: cancer registration and death registration are both statutory, but cancer survival analysis is illegal.


Lack of dedicated funds or specialised structures for registration are the two main reasons for insufficient registry activity in the EU. The cost of human and capital resources required as national investment for cancer registration is relatively low if we consider that registration is essential for basic, epidemiological, aetiological and bio-bank-clinical research, for studies on molecular and genetic epidemiology and on patientsquality of life. For all of the above, a cancer registry or a registry network should be established in every country.


Support to cancer registration in all Member States is needed to remove legal constraints in the interest of public health. This would create harmonised cancer registry procedures and efficient cancer control monitoring across Europe. Cancer Registries should be further developed and involved in the impact evaluation of cancer screening and cancer treatment programmes:

·          the EU should recommend that all Member States make cancer registration a statutory requirement as a public health tool for evaluation of cancer control, including incidence, screening and survival;

·          EU-wide standards should be defined for the minimal and optimal sample size and design for establishing cancer registration in countries where is currently absent.


In 2007 the EUROCHIP Project gave voice to the European scientific community in a document addresses to the European Commission Network of Competent Authorities and Network of Working Party Leaders to consider CRs as important as National Institutes of Statistics. EUROCHIP Recommendations highlight that:


·          cancer registries are necessary for cancer control and epidemiological research, public health programme planning, and patient care improvement;

·          cancer registry provide standardized data comparable across Europe;

·          cancer registries are essential to implement Cancer Health Information System in the European Union;

·          cancer registries are unique providers of cancer data at population level;

·          cancer registries need to be maintained and supported;

·          cancer registries need ad-hoc national privacy restricting legislations;

·          cancer registries should be recognised a role comparable to that of National Institutes of Statistics;

·          European projects connecting cancer registries are the best tools for the comparison of cancer burden in EU. Data from European networks and projects


This chapter uses data, information and results coming from various cancer organisations, networks and projects:


IARC - International Agency of Research on Cancer: IARC is part of the World Health Organization and its mission is to coordinate and conduct research on the causes of human cancer, the mechanisms of carcinogenesis, and to develop scientific strategies for cancer control. The Agency is involved in both epidemiological and laboratory research and disseminates scientific information through publications, meetings, courses, and fellowships. IARC is responsible to publish the volume of “Cancer Incidence in V Continents” and to produce national estimates of cancer incidence. See:


ENCREuropean Network of Cancer Registries: ENCR is concerned with the teaching of cancer registrars, definition of registration guidelines, collection of data on defined indicators, developing recommendations for proper monitoring of the cancer burden and for promote the use of cancer registries in cancer control, health-care planning and researchSee:


EUROCHIP I and II: The EUROCHIP project is funded by the European Commission to address inequalities in cancer information in Europe and is a recognised European imprimatur network helping all EU Member States to improve a better access to organised information and knowledge on cancer across the EU. The specific aim of EUROCHIP is to set up a Europe-wide cancer surveillance system to describe differences, identity problems and promote actions to reduce inequalities in cancer care, by extending collaboration, establishing or strengthening health information systems. See:


EUROCARECancer survival in Europe: The EUROCARE project was set to measure and explain differences in cancer survival rates across Europe. A further aim is to compare practices in diagnosis and therapy so as to interpret these differences. The four phases of the project extended throughout the 1990s and into the current decade. See:


EUROCAN+ Plus. The IARC project, subsidized by the European Commission and started in 2005, involves Denmark, France, Hungary, Ireland, Spain (Andalusia and Catalunia), Switzerland, the Netherlands and the United Kingdom. The objectives of EUROCAN+PLUS are: identify barriers to collaboration in research and recommend methods of overcoming these hurdles to improve cancer research in Europe; analysis and synthesis of National Cancer Plans in Europe; evaluation of potential contribution to EU 2015 Cancer Target; development of a common European Union Cancer Plan; evaluation of potential contribution to EU 2015 Cancer Target. See:


MOSES II: The European Society for Medical Oncology (ESMO) addresses global inequalities in cancer care and practice in Europe. ESMO performed the ‘MOSES’ (Medical Oncology Status in Europe Survey) Project. It collected detailed information about the status of medical oncology in Europe through questionnaires. MOSES-II, by the end of 2005, collected data from 34 European countries regarding teaching and continuing medical education, existing facilities, clinical research, patterns of care, national societies/registries and guidelines on cancer. See:


A global comparison regarding patient access to cancer drugs by Karolinska Institute and the Stockholm Schools of Economics. This study, looking at 19 European countries aims to determine the existence and extent of inequality of access to treatment for cancer patients and availability of new cancer drugs. See: