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European cancer records organised for research excellence

Over 175 cancer registries exist in Europe that needs to be improved to meet the challenges of rapidly increasing data volumes at unprecedented rates.

Health

The EUROCOURSE project has addressed the opportunities, requirements, as well as basic and advanced functions of population-based cancer registries. Researchers also explored the strengths and best practices in relation to the registries for all beneficiaries (patients and doctors), stakeholders and the cancer research community. EUROCOURSE's overarching purpose was to create a basis for the sustainable development and better use of cancer registries across Europe. In turn, this would lead to better control of cancer epidemics and improved quality of oncological care through the analysis of practices. Meetings, planning on needs for the future, workshops, an analysis of funding and research, and a survey on best practice laid the foundations for a questionnaire facility for the European Network of Cancer Registries. The EUROCOURSE project placed focus on clarity of ethical principles and standardisation of practices. Work included a survey, revised confidentiality guidelines, and reviews on best confidentiality practices with regard to biobanks as well as clinical and registry data. Specifically for data collection and analysis, EUROCOURSE organised and completed reports and recommendations on data capture, screening, therapy and timelines. Databases and websites as well as many reviews and papers were used to disseminate vast amounts of data. There is now a public access dataset for routine analysis and a research database for participating cancer registries. For the comprehensive programme of work on cancer intelligence, the European Cancer Observatory website was launched in September 2012. The project website gives a full project summary, including open access to publications, deliverables, newsletters, photos and related documents. EUROCOURSE has enabled better conditions for European or global studies on cancer incidence, detection and prognosis with sustainable improvements in cancer registries and better collaboration. For the future, this work stands to increase registry coverage for a further 10 years in a logical and controlled way. This is good news for all cancer researchers, workers and the potential 3.5 million new patients every year in the EU.

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