12 research outputs found
Towards a European Cancer Information System: Status October 2016
Cancer is the second most common cause of death in the European Union. In 2009, the European Commission adopted the Communication on Action Against Cancer: European Partnership which defines several objectives for reducing the burden of cancer in Europe. Evaluation of measures to implement this goal is critically dependent on accurate and comparable European cancer data available for derivation of incidence, prevalence, survival and mortality statistics. For this purpose, the Joint Research Centre (JRC), in its role as a scientific service to the European Commission, and in close collaboration with the Directorate-General for Health and Food Safety (DG SANTE), is supporting the
creation of a cancer-information system for Europe to be built upon existing experience, competence and cooperation of national and regional cancer registries.JRC.F.1-Health in Societ
Mapping and zooming in on childhood obesity
Overweight and obesity are a challenge for children and adolescents worldwide and in the EU. This report shows the dimension of the challenge at the EU level and tells a series of stories, illustrated through maps, that highlight and make the case for the importance of showing data disaggregated at various levels (by socio-economic status or by region ā NUTS2, and even NUTS3).
The data and maps presented show that education level for example, is an important determinant of obesity. Data collected at local level are a powerful source of knowledge that can and should be used for evidence-informed and truly tailor-made targeted actions and policies. This is illustrated by the comprehensive yearly evaluation of children's health that the Portuguese city of Gaia organises and the actions that stem from it. Interventions at local level based on local data have immediacy and deliver a sense of action and empowerment that is hardly achievable at national level.
The stories selected here are mere examples; other stories, using other disaggregated data sets, could have been told. There is room and need for deepening data collection relevant to children's health and childhood obesity and to make it more accessible and comparable. This will benefit decision-makers at every level, public health practitioners and researchers. And most importantly, it will benefit the health of children and adolescents in our continent.JRC.F.1-Health in Societ
Testing comparability of existing and innovative bioassays for water quality assessment
The JRC led a consortium of seventeen research Institutes from eleven countries in EU and associated countries to evaluate the suitability of the current paradigm in environmental risk assessment that considers the risk of single chemicals for assessing water quality. Combined effects of chemical mixtures of concern were measured on different aquatic organisms and different levels of biological organisation using existing and innovative bioassays.
Aquatic organisms in most European surface waters were exposed to many chemical pollutants simultaneously. However, the current paradigm in water quality assessment under the Water Framework Directive (WFD) still considers the effects of single substances instead of evaluating the combined action of environmentally relevant mixtures.The potential effects of combinations of chemicals are equally relevant to the risk assessment of consumer products and of drinking water to humans.
In this EU-wide exercise, we could show that exposure to mixtures of dissimilarity acting substances at concentrations considered environmentally acceptable can exert significant effects on the biota. Therefore, chemical monitoring of a few substances may be insufficient to assess the quality status of water impacted by complex anthropogenic mixtures.
The study highlighted an urgent need to revise methods and paradigms used to assess the safety of chemicals to the environment. Bioassays as part of a multi-tier approach to water quality monitoring can fill the gap between chemical and ecological assessments for a more holistic characterisation of water quality.
Considering the upcoming revision of the WFD in 2019, it is timely to introduce the issue of risk posed by mixtures of pollutants into the discussion table and find innovative ways to assess water quality in a more holistic way than the mere assessment of biological and chemical indicators.JRC.D.2-Water and Marine Resource
Defining the roadmap towards revision of ENCR coding standards and training for cancer registries
The European Network of Cancer Registries (ENCR) and the Joint Research Centre (JRC) jointly support harmonising the activities of the European population-based cancer registries (CR) in providing reliable and valid data on cancer.
The process to supply valid, complete and comparable data in different European Countries, implies that CR implement common rules to define and code cancer and receive similar training. For this reason, one of the main activities of the ENCR-JRC is to provide CR staff with specific recommendations on coding along with training.
For ENCR-JRC the objective of this workshop was to collate previous and current requests from CR and provide advice on the most pressing issues relating to recommendations and training.
The workshop was planned during the ENCR Steering Committee (SC) meeting, which took place on November 2014, and JRC (the Secretariat of ENCR) was requested to organise it.
A group of experts on cancer registration was identified. This group included the ENCR-SC members, representatives from Institutions and cancer research projects which collaborate with CR (i.e. IARC, Eurocare, Concord, Rarecare), representatives from national networks of CR, members of the Cancer Information group at the JRC, and other specialists in the field.
Prior to the workshop, an anonymous questionnaire was sent to the group of experts. Moreover, all directors and staff of CR were invited to complete the questionnaire and provide comments in order for ENCR- JRC to get a more comprehensive overview of the situation. The questionnaire invited respondents to specify the five most urgent topics, to be addressed, on both recommendations and training.
During the workshop, participants (around 30 people) were split into two groups: one to focus on recommendations and the other to focus on training. For each group a moderator facilitated the debate presented the responses to the questionnaire, which were discussed in detail using the Metaplan method.
The results of the discussion were summarized in a final plenary section, where further clarifications were given and all the participants were involved in the discussion.
In summary, the topics to be addressed by the ENCR-SC, in relation to recommendations, either as updates of current recommendations or for new specific ones, were: Multiple primary rules; Staging; Registration/reportability criteria; Death Certificate Only cases (DCO) ā Death Certificate Notified cases (DCN); Date of incidence in relation to diagnosis; 'Complicated' cancers (e.g. bladder, etc.); Haematological cancers; and coding of borderline malignancies.
The group on training suggested that all the issues that were raised (Cancer Registration; Haematological malignancies; Analysis; Stage; Quality; Multiple primaries; many on Specific cancer types; and Grading) should be addressed making available on the web high quality, reliable and training-oriented documentations. JRC offered to translate these documents, if necessary, into other European languages. For training on specific technical methodology (analysis, data quality) it was suggested that traditional face-to-face courses be provided.
The workshop highlighted that recommendations and training are interlinked and this implies that, in the future, any new recommendation should be issued together with training documentation to explain its practical application.
The technical proposals made at the workshop will help the ENCR-SC to prioritize the future supporting activities to the real needs of CR.JRC.I.2-Public Health Policy Suppor
The European Cancer Information System: exploring linkages between indoor radon concentrations and data on cancer burden
Exposure to radon over time has significant detrimental effects on human health. Approximately 226,000 annual radon-related deaths have been reported from 66 countries (1). Many countries have a radon action plan, in order to reduce the harmful effects of radon exposure on the general public. Maps are routinely used to assist with mitigation strategies and delineate areas of priority regulation. Standard regulations in the European Union include the requirement for workplaces to test and the requirement to have reduction methods in newly built homes. Such laws are assigned systematically to areas that are understood to have high values of indoor radon. This article demonstrates that the boundaries of radon priority areas may vary, depending on the data set and methods used. We propose a table and a decision matrix to assist in choosing the most appropriate visual aid according to the purpose for which the map is to be used. We conclude that no single radon map is suitable to fit all objectives, and some maps are more suitable than others depending on the purpose
Dotting the āiā of Interoperability in FAIR Cancer-Registry Data Sets
To conform to FAIR principles, data should be findable, accessible, interoperable, and reusable. Whereas tools exist for making data findable and accessible, interoperability is not straightforward and can limit data reusability. Most interoperability-based solutions address semantic description and metadata linkage, but these alone are not sufficient for the requirements of inter-comparison of population-based cancer data, where strict adherence to data-rules is of paramount importance. Ontologies, and more importantly their formalism in description logics, can play a key role in the automation of data-harmonization processes predominantly via the formalization of the data validation rules within the data-domain model. This in turn leads to a potential quality metric allowing users or agents to determine the limitations in the interpretation and comparability of the data. An approach is described for cancer-registry data with practical examples of how the validation rules can be modeled with description logic. Conformance of data to the rules can be quantified to provide metrics for several quality dimensions. Integrating these with metrics derived for other quality dimensions using tools such as data-shape languages and data-completion tests builds up a data-quality context to serve as an additional component in the FAIR digital object to support interoperability in the wider sense
Cancer burden indicators in Europe: insights from national and regional information
With more than 3 million new cases and 1.4 million deaths estimated for 2018 , cancer represents the second most important cause of death and morbidity in the EU-28 .
Population-based cancer registration represents the 'gold' standard for the provision of unbiased information on cancer burden in a defined population and how it is changing over time.
Population-based cancer registries (PBCRs) collect, manage and analyse data on patients diagnosed with cancer within a defined geographical area over a certain calendar period. They are invaluable resources for the clinical and epidemiological investigation of cancer and have a unique role in supporting public health officials and agencies in the planning and evaluation of cancer prevention and control programmes.
The European Network of Cancer Registries (ENCR) , in operation since 1990, was established within the framework of the Europe Against Cancer Programme of the European Commission. The ENCR promotes collaboration between cancer registries, defines data collection standards, and supports cancer registries as data providers for the supply of information necessary to quantify and monitor the burden of cancer in the European Union and Europe .JRC.F.1-Health in Societ
Activities 2012-2016 of the European Commission's JOINT RESEARCH CENTRE (JRC) in collaboration with the EUROPEAN NETWORK OF CANCER REGISTRIES (ENCR).
The Joint ReĀsearch Centre (JRC), in its role as a scientific service to the European Commission and in close collaboration with the Directorate-General for Health and Food Safety (DG SANTE), is supporting the creation of a cancer information system to assess and monitor the burden of cancer in Europe.
The European Network of Cancer Registries (ENCR), established in 1989 within the framework of the Europe Against Cancer programme of the European Commission, connects over 160 national and regional European cancer registries.
In 2012, the ENCR endorsed the JRCās role in hosting its secretariat, ensuring its administrative functioning and networking as well as paving the way towards further coordination and harmonisation aimed at accurate assessment and reliable comparisons of cancer burden indicators all over Europe. The JRC's support to the ENCR primarily addresses harmonization of registration expertise and processes, which will enable the publication and accurate comparison of the collected data at European level.JRC.F.1-Health in Societ
An Ontology to Model the International Rules for Multiple Primary Malignant Tumours in Cancer Registration
Population-based cancer registry data provide a key epidemiological resource for monitoring cancer in defined populations. Validation of the data variables contributing to a common data set is necessary to remove statistical bias; the process is currently performed centrally. An ontology-based approach promises advantages in devolving the validation process to the registry level but the checks regarding multiple primary tumours have presented a hurdle. This work presents a solution by modelling the international rules for multiple primary cancers in description logic. Topography groupings described in the rules had to be further categorised in order to simplify the axioms. Description logic expressivity was constrained as far as possible for reasons of automatic reasoning performance. The axioms were consistently able to trap all the different types of scenarios signalling violation of the rules. Batch processing of many records were performed using the Web Ontology Language application programme interface. Performance issues were circumvented for large data sets using the software interface to perform the reasoning operations on the basis of the axioms encoded in the ontology. These results remove one remaining hurdle in developing a purely ontology-based solution for performing the European harmonised data-quality checks, with a number of inherent advantages including the formalisation and integration of the validation rules within the domain data model itself
Computing and Disseminating European Statistics on Cancer Burden: the European Cancer Information System
Data from population-based cancer registries are essential for setting up a comprehensive information system on the cancer burden including statistical indicators on incidence, mortality, prevalence and survival.
For this purpose, the European Commission's Joint Research Centre (JRC) in its scientific and technical role and in close collaboration with the Directorate-General for Health and Food Safety (DG SANTE), is supporting the creation of a "European Cancer Information System" (ECIS), building on existing experience, competence and cooperation of cancer registries associated to the European Network of Cancer Registries (ENCR), together with other key stakeholders in the cancer information domain.JRC.F.1-Health in Societ