Fostering Cancer Prevalence Estimates in Europe to Boost the European Cancer Information System

Key Contextual Factors

• Country-specific regulations on population-based cancer registration (national or regional).
• European Network of Cancer Registries (ENCR) and Joint Research Center (JRC) acting as scientific secretariat of ENCR [1].
• EUROCARE network aimed at monitoring cancer survival and prevalence by country in Europe [2].
• Joint Call for Data of ENCR-JRC addressed to European cancer registries to serve European studies on cancer incidence, survival and prevalence [3].
• European Cancer Information System (ECIS): web-portal managed by ENRC-JRC and reporting indicators on cancer epidemiology in Europe [4-7].
• Prevalence by disease duration identifies groups with different health care needs.

Key Components/Steps

• EUROCARE-6 study dataset reporting data from 109 European cancer registries in 29 countries. Finalization of quality checked and standardized dataset.
• Estimated target prevalence indicators: i) limited-duration prevalence ii) complete prevalence iii) time projections to 1/1/2020.
• Target prevalence indicators were estimated for 32 cancer entities by sex, age, year, disease duration (2,5,10,15, 20, 25+ years), country, European Pool (29 countries) and EU-27 [8].
• Validation of the methodology to derive complete prevalence projections against observed prevalence data from the long term established Nordic cancer registries [9].
• An e-learning on methods and software to estimate complete cancer prevalence starting from observed limited-duration prevalence was offered to the European cancer registries. The course was organised in collaboration with ENCR and the JRC [10].

Main Impacts / Added Value

• Policy makers, health professionals, patients and citizens will benefit of a wider spectrum of representative indicators on cancer burden. Standardised information on cancer survivors at population level is needed to design and assess cancer control plans, to best allocate health resources and for Health Technology Assessment (HTA).
• Estimates on cancer survivors provide evidence to promote patients' social inclusion and rehabilitation, survivorship plans and quality of life assessment. 
• Systematic prevalence information by country contributes to assess disparities in the Cancer Inequality Registry [11] and also inform initiatives to tackle patients' discrimination, such as the legislation on the Right to be Forgotten.
• iPAAC prevalence estimates will contribute to feed the European Cancer Information System (ECIS), the web portal managed by the JRC [4]. This is a first step to reach a more systematic dissemination in Europe.

Lessons Learned

• Unlike incidence and survival, complete cancer prevalence can only be estimated through statistical methods (to recover long-term survivors beyond the limited observed follow-up). This represents a major obstacle for the registries in terms of expertise and resources. 
• Joint analysis of European datasets increases data quality and allows to better exploit the big potential of cancer registries data which is often under-utilised for lack of resources and technical skills at the local level.
• Systematic provision of standardised and comparable indicators on cancer survivors at EU level is feasible through pan-European collaborative studies. Dedicated resources to collaborative studies and increasing capacity building at MS level are crucial to ensure a sustainable implementation.

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