High Resolution Studies within the

European Cancer Information System

Cooperation with EPAAC

Riccardo Capocaccia

Istituto Superiore di Sanità (ISS), Italy

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.

Proposal for the ECIS structure

Other data collection

Data Base Management

Data analysis task 1

Data analysis task 2

Data analysis task 3

CONSORTIUM

….

CR data Gateway

Results diffusion and disseminationResearch Community

Research Dataset Standard

Results

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

Developing ECIS: 1 Data Centralization

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

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

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

Developing ECIS. 1: centralizing the data

High detail

Low detail

Cancer Registriesdatabase

High Resolution

Clinical

Health Care System

Demographic

Socio Economic

Mortality data

individual level

aggregated level

Pharma

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

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

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

Population-based data

Type Coverage TimeInformation

detail

Retrospective High Resolution

Sample Episodical High

Perspective High Resolution

Sample Continuous Medium

Basic Total Continuous Low

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

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 ?

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