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Knowledge4Policy
KNOWLEDGE FOR POLICY

Knowledge Centre on Cancer

We foster scientific and technical coordination of EU activities on cancer, while expanding the EU’s capacities and systems for prevention, early detection, treatment and care.

Page | Last updated: 07 Jun 2024

Cancer information

Fulfilling the role of a data hub, future milestones and challenges.

The European Cancer Information System (ECIS)

The European Cancer Information System (ECIS) disseminates cancer burden indicators by cancer type, geographical area, sex, age and year, permitting the exploration of geographical patterns and/or temporal trends of incidence, mortality, survival and prevalence across European areas.

 

 

The data of population-based cancer registries are the basis for the estimation of the cancer burden and its trends over time and are crucial in the planification and evaluation of cancer control programmes in the area of registration.

Cancer registration in Europe consists of around 150 population-based cancer registries, systematically collecting data on all new cancer cases that occur in a well-defined population, corresponding to a specific geographic area.

Harmonization of data and registration processes is supported by the European Network of Cancer Registries (ENCR) , ensuring comparability of cancer burden indicators between countries and alignment with the major stakeholders, organisation and research groups active in cancer surveillance at European and international level.

 

The European Cancer Inequalities Registry

European Cancer Inequalities Registry (ECIR) is a flagship initiative of the Europe’s Beating Cancer Plan. It aims to highlight disparities, gaps and inequalities between and within EU countries (EU27 plus Iceland and Norway). It consists of several elements: the data tool, the reporting mechanisms (cancer country profiles and analytical reports prepared by the Organisation for Economic Cooperation and Development (OECD), and inequality factsheets. ECIR benefits from the work and contributions of many different players, including Member States, international organisations, research partners and European Commission services.

The Data Tool presents cancer-related indicators along the cancer continuum, from prevention, screening, diagnosis and treatment to survival and quality of life, as well as indicators quantifying the burden of cancer. The data included should originate from authoritative sources that are independent of private, commercial or national interests (i.e. fostering patient and citizen-centricity) and fulfil data quality criteria. The data tool presents inequalities for eight ‘inequality dimensions’: by country, sex, education level, income, urbanisation, age, employment status and disability and plans to extend to more dimensions.

 

The EU Platform on Rare Disease Registration

The EU Platform on Rare Disease Registration, EU RD Platform, is the platform bringing together European rare disease (RD) registries. The Platform aims to tackle the fragmentation of rare disease patients' data contained in hundreds of registries across Europe.

According to the definition used in the EU, a disease is considered to be rare if it affects less than 5 in 10 000 persons, which includes also cancers. Thus, the EU RD Platform includes and supports RD registries that deal with cancers registries alongside other RD registries. 

The EU RD Platform makes registries' data searchable/findable at EU level, thus helping to reach critical numbers of patients necessary for studies and research. It increases visibility and value of each registry and its data and provides standards for data collection (set of common data elements for rare disease registration) and data exchange.

 

Ongoing and future challenges

Examples of projects linking cancer incidence/mortality to environmental exposures:
  • investigating links between exposure to environmental carcinogens and cancer, through Information Platform for Chemical Monitoring (IPCHEM),
  • air pollution: mapping of particular matter 2.5 (PM2.5) concentrations and linking to lung cancer
  • water pollution: linking poyaromatic hydrocarbons (PAHs) exposure through surface water to cancer incidence and mortality, 
  • soil condition: assessing the link between carcinogenic heavy metals and pesticides in soil and investigate different exposure routes in relation to cancer incidence and mortality, 
  • indoor radon exposure: mapping indoor radon and linking to lung cancer.
Other projects:
  • Setting up training programmes for cancer registries. 
  • Establishing an EU consultation centre for cancer control plans to help MS experts in planning and monitoring cancer control activities.
  • Conducting a feasibility study for improvement of cancer registry information systems.
  • Incidence and survival analysis by stage and / or treatment type, investigating treatment patterns by cancer entity, geographical area, time trends, age groups, etc, Inequalities in the access to health care services, compliance with clinical guidelines and evaluation of the impact of new treatments.
  • Identifying rare disease registries dealing with cancers and providing them with the tools offered by the European Rare Disease Registry Infrastructure - (ERDRI) including the tool SPIDER for pseudonymisation, data linkage and data transfer of patients (patient cohort building capacity).
  • Improving data collection on paediatric cancer stage and treatment data. 
  • Linking and decentralizing cancer registry data sources, including on treatment. 
  • Extending the ECIR data tool to regional inequalities and identification of cancer inequalities in vulnerable populations.
  • Improve the quality and completeness of data from screening programmes and disseminate cancer screening indicators in ECIS ( CanScreen-ECIS ).