La registrazione del cancro in Europa:nuove sfide, nuove opportunità (il

progetto Eurocourse)

Stefano RossoCPO - Registro Tumori Piemonte

AIRTum XIII Riunione Annuale, Siracusa 2009

Cancer registration in Europe: newchallenges, new opportunities (The

Eurocourse Project)

Cancer Registration in Europe

41 Countries

195 Population-BasedRegistries

The European Network of CancerRegistries - ENCR

• History: Born in 1989 within the framework of the“Europe Against Cancer” programme

• Activities: Database (Eurocim), Recommendation oncancer registration and Standards, Tools for dataprocessing, Consultancies, Training, Grant proposals

• Steering Committee: Parkin (chairman), Sankila,Crocetti, Curado, Steliarova, Bray, Gavin, Siesling, Lutz,Rosso.

The Eurocourse Project

• Title: EUROpe against Cancer:Optimisation of Use of cancer Registriesfor Scientific Excellence

• Writing committee in 2007: Herik Moeller,Freddie Bray, Hans Storm

• The 7th Framework Programme– Funded by FP7-ERANET-2007-RTD:

Coordination and support actions

ERA-NET

1) Systematic exchange of information andgood practices on existing programmes

2) Identification and analysis of commonstrategic issues

3) Development of joint activities betweennational or regional programmes

4) Implementation of joint transnationalresearch activities

ERA-NET Coordination

The Eurocourse ProjectThe main purpose of the project is to improve the use of cancer registries in

European countries through program owners. and researchers. networking,information exchange and benchmarking of best practice.

OBJECTIVES:• to study and to compare strategies, policies and practices in the funding and

management of cancer registries in various European countries

• to study and to compare approaches and exchange experiences and bestpractices in research using the cancer registries in Europe

• to provide recommendations for best practices as well as future training andresearch

• to disseminate and to transmit the knowledge collected in the project toresearchers, decision-makers and practitioners at regional, national andinternational level

• to develop a strategy for programme owners for monitoring cancer and forpromoting research on cancer using existing databases

• to improve the quality, comparability and availability of cancer incidencedata and thus strengthen the basis for monitoring cancer incidence andmortality

• to provide regular and timely information on the burden of cancer

• to capitalise on existing functions of cancer registries and promote cancercontrol, training of health scientists, health-care planning and cancerresearch

The Eurocourse ProjectProgram Owners

1 Comprehensive Cancer Centre South (IKZ) Netherlands

2 Ministry of Public Health Romania

4 University of Tartu Estonia

5 Statistics Austria Austria

6 Scientific Institute of Public Health Belgium

7 Danish Cancer Society Denmark

8 National Board of Health Denmark

9 Cancer Society of Finland Finland

10 Ministry of Health Iceland

11 Regional Centre for Cancer prevention Italy

13 Regional Oncologic Centre Board – Uppsala Örebroregionen Sweden

15 Department of Health, Social Services and Public Safety – Population Health Directorate

United Kingdom Northern Ireland

16 Irish National Cancer Registry Board Ireland

17 Health Department - Basque government, Basque Foundation for Health research andInnovation Spain

18 Skane County Council (Lund-Malmo) Sweden

The Eurocourse ProjectWork Package List

WP1 Exchange of knowledge about national programmes JW Coebergh

WP2 Ethical conduct of research H Storm

WP3 Tools for improving the quality, coverage and use of cancer registration data in Europe R Zanetti

WP4 The development, harmonization, analysis and exchange of European cancer registry dataH Comber

WP5 Interface of cancer registries with cancer screening programmes A Antila

WP6 Interface of cancer registries with clinical care JW Coebergh

WP7 Interface of cancer registries with biobanks J Dillner

WP8 Dissemination of findings and training JW Coebergh

WP9 European cancer control summit Steering Board

WP10 Coordination of EUROCOURSE activities Steering Board

The Eurocourse ProjectOverall strategy of the Work Plan

The Eurocourse ProjectGovernance

• Steering Board– ENCR Steering Committee– IARC representatives– Representatives of partners (program owners)

• Executive Board– Representatives of the ENCR SC– IARC representative– Work Package leaders

• Subcontractors– IARC– MedLaw Consult– Ecomanny BV

The Eurocourse ProjectDeliverables

Del No Deliverable title

D 1.1 Analysis of funding and research of cancer registries in Europe

D 1.2 Documentation on needs for the future

D 1.3 Kick off meetingD 1.4 Survey on best practice

D 1.5 WorkshopD 2.1 Revised confidentiality guidelines including ethical dimension (month 18)

D 2.2 Draft on best practice and ethics dealing with biological and registry data

D 2.3 Draft best practice and ethics dealing with clinical and registry data

D 3.1 Working group reports and surveys: data requisition methods, cancer staging, follow-

up and survival

D 3.2 Workshop on national vs. regional registration

D 3.3 Working Group recommendations: automated data capture, registration and

evaluating screening, registration and evaluating therapy, a minimum cancer

registration dataset; ascertainment vs. timeliness

D 3.4 Working group reviews: completeness indicators, quality control measures

D 4.1 Public access dataset for routine situation analyses

D 4.2 Research dataset with access restricted to the registries and researchers

D 4.3 Workshop on optimal use of the registry data in research: meeting report Interface

with other European partners: meeting report

D 4.4 Development of guidelines for the use of data and recommendations regarding

specific public use datasets to be developed

D 4.5 Development of a European Cancer Observatory: the formation of a comprehensive

programme of work on cancer intelligence

The Eurocourse ProjectDeliverables

Del No Deliverable title

D 5.1 D 5.1 Recommendations on screening-related items in European data set

D 5.2 Recommendations on further development of standards and procedures of cancer registration

relevant to cancer screening and related activities

D 5.3 Recommendations on collaborative projects of cancer registries and screening programmes

worthy of technical, professional and logistic support

D 5.4 Pan-European Network meeting

D 6.1 Literature review, schematic overview, and impact assessment of population-based clinical

researchD 6.2 State of the art of use of cancer recurrence data in evaluating cancer care

D 6.3 State of the art of effective use of registry indicators in evaluating cancer care

D 6.4 Workshop on clinical databases and treatment registries

D 6.5 State of the art of use of clinical databases and treatment registries in evaluating cancer care

D 7.1 European meeting on “Biobank/Registry interfaces: working towards convergence”

D 7.2 Development of an integrated, standardized, minimal dataset of information on aetiology,

individual data, pathology, treatment and outcomes, complementary between biobanks and

i t iD 7.3 Identification of methods for accelerating data acquisition by registries immediately after diagnosis

D 7.4 Recommendations on protocols and procedures for integrating cancer registries in translational

research using biobank specimens

The Eurocourse ProjectDeliverables

Del No Deliverable title

D 8.1 Online reports: newsflashes - regular updates of current activities and news within the

Network (months)

D 8.2 Online reports: cancer fact sheets, statbites, research protocols, best practice manuals,

recommendations, reports, surveys, reviews, detailed contact lists of European

registries, inventory of publications using cancer registries’ data

D 8.3 Annual Meeting

D 9.1 Preparatory conference

D 9.2 2-Day Summit with around 200 delegates

D 9.3 Summit report

D 10.1 Formation of different bodies

D 10.2 Establishment of EUROCOURSE webpage

D 10.3 Reports for the Commission

D 10.4 Dissemination of reports to all participants

The Eurocourse Project

• Surveys on several topics:– policies (national, regional), funding and institutional

structure (WP1);

– confidentiality guidelines & ethical issues (WP2);

– registration, follow-up and coding practices (WP3);

– use of clinical data & clinical databases (WP3, WP6);

– data from screening practice (WP5);

– population-based clinical research (WP6);

– population-based research & biobanks (WP7);

– data use & dissemination (WP4, WP8)

The Eurocourse Project

• Workshops on:– best practice, confidentiality & ethics (WP2);

– data requisition, automated data capture (WP3);

– completeness vs timeliness (WP3);

– regional vs national coverage (WP3)

– use of clinical data, staging, treatment (WP3, WP6);

– screening-related data (WP3, WP5)

– optimal use of data (WP4);

– biobanks/registries interfaces (WP7);

– European dataset (guidelines) (WP4)

The Eurocourse Project

• Recommendation & Guidelines on:– best practice, confidentiality & ethics;

– Minimum data set, clinical data, screeningdata, follow-up;

– use of a public/restricted dataset of Europeancancer registries data

– procedures and protocols for integratingbiobanks data;

– results dissemination

The Eurocourse Project(the soul)

• Seeking large collaboration among registries

• Co-optation & self-promotion

• Transparency & documentation

Symbol of stable growthwith feedback from roots