Joint Research CentreThe European Commission’s in-house science service

Health Information – Creating the evidence base for European Union

health policies:The European Commission Joint Research Centre's perspective

https://ec.europa.eu/jrc

Prof. Dr. Krzysztof Maruszewski

The JRC in the European Commission

Commissioner

Tibor Navracsics

Education, Culture, Youth and Sport

President

Jean-Claude Juncker

27 Commission Members

DG Education & Culture (EAC)Director-General

Vladimír Šucha

Joint Research Centre

32 October 2015

Joint Research Centre

EUROPEAN COMMISSION

DIRECTORATESGENERAL

DIRECTORATESINSTITUTES

UNITS SCIENTIFIC UNITS

European Reference Laboratories,

Centres & Bureaus

JRC

4

As the Commission's in-house science service, the Joint Research Centre's mission is to provide EU policies with independent, evidence-based scientific and technical support throughout the whole policy cycle.

Working in close cooperation with policy Directorates-General, the JRC addresses key societal challenges while stimulating innovation through developing new methods, tools and standards, and sharing its know-how with the Member States, the scientific community and international partners.

The Mission of the Joint Research Centre

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Chemical Assessment and Testing

Systems

Toxicology

Public HealthPolicy Support

Nano-Biosciences

Institute for Health and Consumer Protection

Director: K. Maruszewski

Molecular Biology and Genomics

JRC - Institute for Health and Consumer Protection

M. P. Aguar Fernandez

C. Nicholl J. Kreysa M. WhelanH. Stamm

IHCP Policy Support Areas

Cancer Registries

Rare Disease Registries

Healthcare Quality

Nutrition and Health

Behavioural Sciences

Genetically Modified

Organisms

Nanotechnology

Public Health

Food and Consumer Products

Chemical Assessment and

Alternatives to Animal Testing

Why is population-based cancer registration

so necessary?

Identifying risks of cancer in different populationgroups;

Determining prognosis of different cancers;

Assessing magnitude of cancer burden and itsevolution;

Planning and evaluation of cancer/controlprogrammes, and formulation of strategies forprimary prevention;

Potentially determining effectiveness of treatment;

Providing a basis for research on cancer causes andoutcomes.

National CRs Regional CRs covering the whole country

Regional CRs No CR

20 National CRs

82 Regional CRs

covering72% of the EU population

The picture of population-based cancer registries in Europe

Information from:2010 and 2014 ENCR surveys

Tasks to address at the European level

Harmonisation:

Establishing metadata standards;

Agreeing data quality standards;

Drawing up guidelines and procedures;

Development of IT tools and systems (e.g. for quality-checking, statistical analysis, and data visualisation).

Collaboration:

Preparing data calls;

Shared research projects;

Participation in working groups;

Training and consultancy.

Communication:

Increasing visibility of cancer registration;

Promotion of work – towards greater EU coverage;

Dissemination of results.

JRC accomplishments since 2012 (1 of 2)

Smooth handover of ENCR secretariatfrom the International Agency forResearch on Cancer (IARC);

Development of ENCR web-site;

Regular newsflashes;

Re-establishment of quarterly ENCRsteering-committee meetings;

Publication of series of ENCR fact sheets;

Re-establishment of ENCR plenaryconference;

JRC accomplishments since 2012 (2 of 2)

Start-up of ENCR working groups – withlandmark publication on harmonised qualitychecks – "one common procedure for Europeancancer registries"

Development of a unique ENCR data submissionportal serving needs of different data users;

Development of open-source quality-checksoftware for adherence to data protocol;

Further development of revamped basic infrastructure (data portal; harmonised data-quality check protocol; data cleaning software tools);

Further harmonisation of registration practices and extension of European meta data set

Rationalisation of data-submission and data-usage processes, (including data quality issues,data-usage permissions, . . .);

Increased stakeholder inclusion and coordination/integration of stakeholder initiatives and activities (e.g. survival statistics, high-resolution studies, cancer diagnosis and treatment of specific cancers, . . .)

European Cancer Registry Data System

Existing European Cancer Registry Data provides the essential

statistics for comparing the magnitude and evolution of the cancer

burden across Europe.

A more comprehensive European Cancer Information System must

facilitate more specific research and answer more questions (e.g.

related to diagnosis and treatment efficacy, quality of life, lifestyle

factors, environmental exposure, socio-economic aspects, etc.),

requiring at least:

Extension to the number of variables collected;

Inter-linkage with other data sources;

Uncomplicated access to more detailed subject data (including clinical databases).

ECIS

30 million people affected in the EU

low prevalence: less than 5 per 10000 persons (EU)

6000-8000 distinct rare diseases

limited knowledge and expertise

fragmentation of data sources

Rare diseases

Communication from the Commission to the European Parliament, the Council,

the European Economic and Social Committee and the Committee of the Regions

on ‘Rare Diseases: Europe’s challenges’ (2008)

High European added value

EU Platform on Rare Diseases Registration

Sustainability: transfer to JRC

European surveillance networks:EUROCAT (congenital anomalies)

30+ registries

SCPE (cerebral palsy)

20+ registries

Interoperability

Registries– national– regional– local– hospital– patients’

ACTIONS

To create the premises for developing interoperabilitybetween registries

To prepare the conditions for connecting the Platform with other health-related data systems (genetic data, biobanks, environment, etc.)

To act as a knowledge-generation centre for rare diseases

Functions: sustainability, interoperability

Thank youfor your attention