High Resolution Studies within the European Cancer Information System Cooperation with EPAAC Riccardo Capocaccia Istitut

1. High Resolution Studies within the European Cancer Information System Cooperation with EPAAC Riccardo Capocaccia Istituto Superiore di Sanità (ISS), Italy

2. WP9 proposal for a European Cancer Information System (ECIS) Cancer Information System: the whole of institutions, persons, procedures, and resources dealing with cancer information and data, and coordinated to provide the necessary knowledge to optimize cancer control activities and operate as research infrastructure in public health.

3. Proposal for the ECIS structure CONSORTIUM CR data Gateway Data Base Management Data analysis task 1 Data analysis task 2 Other data collection Data analysis task 3 …. Research Dataset Standard Results Results diffusion and dissemination Research Community

4. Developing ECIS: 1 Data Centralization • Collection, organization and diffusion of the data according to a unitary coherent design • Preserving the logical connections between different datasets and data items • Accessibility to the whole database through a unique entry • Not necessarily a unique physical location, nor a centralized ownership of the whole database

5. Developing ECIS: 2Providing a sustained data analysis capacity Not only yearly updating of basic indicators Providing answers to evolving needs: new questions, new topics Enrolling existing expertise in population based epidemiological research Close involvement of research expertise also in data quality control

6. Developing ECIS: 3Legal status, commitment Running an information system mainly requires connecting people: providers, analysts, users Removing barriers, building confidence ECIS existence, mission, and objectives should be officially stated Involvement of EU and Member States Sustained funding

7. Developing ECIS: 4Opening access Cancer (health) data come from the citizens Their collection is paid by the citizens Cancer information must be available to the citizens and for citizens’ needs Legal constraints have to be taken into account Friendly procedures should be set up for the widest data access and use

8. Developing ECIS. 1: centralizing the data Pharma Clinical High Resolution Cancer Registries database individual level Mortality data aggregated level Demographic Health Care System Socio Economic High detail Low detail

9. Retrospective High Resolution studies Use: interpretation of detected changes in space and time of survival and incidence rates; answer specific questions on the effect of diagnostic and therapeutic changes Collection: on a project by project basis by cancer registries for a representative sample from all patients Ad hoc collection from past cases under a flexible design and a common protocol Content: very detailed information on stage, biology, treatment, prognostic factors, lifestyle, socio-economic status, comorbidity; clinical follow-up for late treatments effects, quality of life, recurrences Data immediately available for survival analysis

10. Prospective High Resolution data Use: up-to date monitoring of the public health impact of cancer control measures and services provision Collection: by cancer registries for a representative sample from all patients Systematic collection from future cases, under a predefined design, a common protocol, and with a sustained support Content: detailed information on stage (basic diagnostic procedures, some exams), biology (i.e. hormonal receptors), and treatment (i.e. type of surgery, class of chemotherapy) Survival available only after a 3-5 years start-up period

11. Basic cancer patients’ data Use: descriptive analysis of incidence, prevalence and survival Collection: systematically collected by population-based cancer registries for all patients Content: demographic data, dates, site, morphology, microscopic confirmation, extent of disease Extension to stage-TNM and type of treatment can be pursued Improving completeness and standardization

12. Population-based data

13. Data from clinical registers Full patients’ data kept at single hospitals/services for clinical management purposes Usually not representative of, or referable to, the totality of patients of that cancer Not directly and individually linkable to cancer registry data Consideration of demographic variables (age, residence Available for aggregate analysis

14. Conclusions • High resolution data have a great importance for the ECIS • Bridge the gap between simple description and effective interpretation and public health use of the cancer data • Need for a coordinated planning, collection and organization of HR, also in connection with other data sources • Sustained plan for a continuous, coordinated and updated HR data collection: toward an ERA-Net scheme ?

15. Conclusions • The reorganization of cancer data collection, analysis and diffusion in Europe through an effective Cancer Information System has a huge potential impact on cancer control and research activities • It is fundamental, to this aim, to involve the entire cancer community: data providers, oncologists, patients, researchers, health politicians and administrators, citizens • Stimulating and supporting the collaboration among these different components for a common objective is the main scope of EPAAC • The opportunity to build the new European Cancer Information System is now: we must catch it