WP leader: Italian National Institute of Health, Italy (Roberta De Angelis)

Outputs and deliverables

Advancing registries data through integration with administrative data sources: mapping data sources available for linkage with registry data

A survey on available electronic data sources for individual linkage was conducted among the European registries involved in iPAAC WP7. Overall, 27 population-based CRs from 14 different countries replied to the questionnaire. Health administrative data sources available for linkage to European cancer registries are not homogeneously accessible and used. This situation reflects heterogeneous health care systems, data owners, legal frameworks and socio-economic conditions. A significant proportion of registries, however, incorporates these data sources in their routine activity and for research purposes. Part of these sources are sufficiently standardised in terms of coding classification and data structure and can be considered valid for deriving comparable indicators on cancer care

Integrating cancer registry data on quality of care

Pilot 7.2 evaluates the feasibility of linking population-based cancer registries datasets with administrative and health data sources to describe the complete pathway of cancer patients from diagnosis to rehabilitation or terminal care and to assess the adherence of the administered treatments to standard clinical guidelines.

Piloting the integration of data on cancer costs

Describing and identifying costs related to specific health care needs provide useful information to better allocate health care resources and facilities, and to reduce inequalities among cancer patients within and between countries. Pilot 7.3 evaluates the feasibility of integrating cancer registry data to produce indicators on costs directly related to diagnostic, care and follow-up pathways. Integration is obtained through electronic linkage of individual information with current administrative data sources available to the registries.

Piloting registries data integration to assess long-term cancer survivorship in adolescents and young adults (AYAs) cancer survivors

The importance of collecting information on long-term effects in cancer survivors (e.g., multiple tumours, co-morbidities) and estimating their excess risk is increasingly acknowledged. Among cancer survivors, AYA (15–39 years at cancer diagnosis) envisage unique treatment and survivorship challenges. Pilot 7.4 aims to assess the feasibility of integrating cancer registry data with administrative datasets to estimate the burden of late effects and to compare late effect indicators across different countries. Late effects may include both clinical and socio-economic outcomes.

Enriching cancer registry data: outcomes and recommendations from iPAAC WP7 pilots

Pilot studies of iPAAC Work Package 7 aimed at assessing the feasibility of enriching cancer registries data with information on the quality of care (pilot 7.2), costs of care (pilot 7.3) and long-term comorbidities in cancer survivors (pilot 7.4). All pilots were based on individual patients' records linked by the registries to the available data sources needed to achieve the pilot-specific objectives. The results of the pilots showed the feasibility of using administrative dataset to add relevant clinical and economic information to the cancer registries data. These outcomes confirm the key role that cancer registries should play in clinical and translational research, as well as in cancer planning and monitoring.

Czech comprehensive ICT model integrating multiple data sources

The essential legal (amendment of the Act on Health Services and the National Health Information System regulation) and technical (new methodology of Czech National Cancer Registry considering integration of epidemiological, administrative, laboratory and clinical data collections) background have been put in place. The final planned part of the comprehensive ICT model (proposal for the Act on eHealth) has been prepared and approved in 2021, including the accompanying proposal on departmental reference statistics, which will form the legal basis for collection and publishing of cancer care performance indicators. Legal, technical and organizational background and the experience with piloting of the comprehensive ICT model are described in this document.

Promoting cancer prevalence estimates in Europe

Cancer survivors are a growing and heterogenous population with varying health care needs through the whole disease journey. Accurate indicators on cancer prevalence are increasingly needed for survivorship care planning. Despite complete prevalence indicators could be derived from population-based cancer registries datasets, they are not systematically available by country in Europe because their calculation requires epidemiological skills and devoted resources. iPAAC Task 7.6 aims at bridging this information gap with an action to spread the use at EU MS level of population-based epidemiological indicators on cancer prevalence. This activity relies on the joint European dataset of the EUROCARE-6 study, quality checked and harmonised in collaboration with the European Association of Cancer Registries (ENCR) and the EC Joint Research Center (JRC).

E-learning on methods and tools on population-based cancer prevalence indicators

Unlike other surveillance metrics the direct measure of cancer prevalence is intrinsically incomplete. Population-based cancer registries indeed cannot capture long term survivors who were diagnosed before the start of registration activity. Complete cancer prevalence, including all people diagnosed with cancer in a given population irrespectively of the date of diagnosis, can only be estimated with statistical methods. This limits the availability of systematic information on cancer survivorship in Europe as appropriate epidemiological skills, tools and resources are needed.

Increasing Member States capacity building in this field is one of the objectives of iPAAC Task 7.6. Learning modules addressed to key stakeholders in the field were developed. An on-line training was held on 22–23 June 2021 including 90 participants from cancer registries and research institutes in 23 countries. The course was organized in collaboration with the European Network of Cancer Registries (ENCR) and the Joint Research Centre of the European Commission.


31/05/2018, Milan

WP7 description and objectives

The goal of this work package is to advance population-based cancer registries information to better support evidence-based cancer surveillance and care.

Cancer registries provide accurate and representative information on cancer patients, real-world data, without any selection due to age, socio-economic or co-morbid condition, granting by design longitudinal follow up, even in the long term. They are not only essential in cancer epidemiology but they have the potential to support quality improvement in cancer care and provide multidimensional information on cancer survivorship.

Despite their potential cancer registries data are under-utilised and this work package aims at developing methods and tools to act in two directions:

1. expanding the current registries data by piloting the linkage with administrative data to derive key additional indicators at population level (data re-use)

2. better exploiting the current registries data by promoting systematic delivery of cancer prevalence indicators at MS level in Europe.

Specific objectives are:

  • to census data sources available for linkage to European cancer registries, accounting for legal framework and data standardisation
  • methodology and feasibility assessment of linking cancer registries data to administrative data sources to derive indicators on:
    • patterns of care and adherence to clinical guide lines (quality of care)
    • direct cost profiles by patterns of care (costs of care)
    • late and adverse effects for Adolescents and Young Adults cancer survivors
  • to pilot a comprehensive integrated ICT model for monitoring and management of cancer care in the Czech Republic embedding the national cancer registry
  • to bridge information gaps on cancer survivors and further enhance the European Cancer Information Systems (ECIS) triggered by the EPAAC Joint Action

Background and previous work