Le prospettive della registrazione dei tumori in Italia e in Europa. Riccardo Capocaccia ISS

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Ferdinando Mancini
8 anni fa
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1 Le prospettive della registrazione dei tumori in Italia e in Europa Riccardo Capocaccia ISS

4 EUROCARE-4: five-yr relative survival cohort analysis of patients diagnosed in Denm ark Finland Iceland Norw ay Sw eden Ireland UK England UK Northern Ireland UK Scotland UK Wales Austria Belgium France Germ any Ne the rlands Sw itzerland Italy Malta Portugal Slovenia Spain Czech Republic Poland COLORECTAL CANCER EUROPEAN MEAN

Scotland UK Wales Austria Belgium France Germ any Ne the rlands Sw itzerland Italy Malta

5 EUROCARE-4: five-yr relative survival cohort analysis of patients diagnosed in Denm ark Finland Iceland Norw ay Sw eden Ireland UK England UK Northern Ireland UK Scotland UK Wales Austria Belgium France Germ any Ne therlands Sw itzerland Italy Malta Portugal Slovenia Spain Czech Republic Poland BREAST (Women) EUROPEAN MEAN

Ireland UK Scotland UK Wales Austria Belgium France Germ any Ne therlands Sw itzerland

6 EUROCARE-4: five-yr relative survival cohort analysis of patients diagnosed in All cancers, adjusted by site mix WOMEN MEN Sw itzerland Germany Norw ay France Iceland Denmark Belgium Netherlands Sw eden Austria Italy UK * Finland Ireland Spain Malta Portugal Czech Republic Slovenia Poland Sw itzerland Germ any Norw ay France Iceland Denmark Belgium Ne therlands Sweden Austria Italy UK * Finland Ireland Spain Malta Portugal Czech Republic Slovenia Poland EUROPEAN MEAN EUROPEAN MEAN

UK * Finland Ireland Spain Malta Portugal Czech Republic Slovenia Poland Sw itzerland Germ any Norw ay France Iceland Denmark

7 EUROCARE-4: five-yr relative survival Period analysis of survival observed in COLON and RECTUM North UK and IE Centre South East

80 COLON and RECTUM North UK and IE Centre

8 EUROCARE-4: five-yr relative survival Period analysis of survival observed in BREAST (Women) North UK and IE Centre South East

BREAST (Women) 80 60 40 20 0 North UK and IE

9 EUROCARE-4: five-yr relative survival Period analysis of survival observed in LUNG North UK and IE Centre South East

11 Five-year (FIN+SWE) average survival: difference from DK and ENG Site Country CLR Denmark CLR England Breast Denmark Breast England

0 8.0 9.8 8.1 CLR England 10.6 9.9 8.9 7.6 8.2 8.1 7.

22 Interpretazione delle differenze di sopravvivenza Migliori trattamenti Trattamenti + efficaci dovuti a diagnosi + precoce Anticipazione diagnostica Sovradiagnosi Studi Modelli Modelli high resolution sopravvivenza aggiustata per stadio e determinanti dello stadio di cura di cura specifici per stadio

23 Relative excess risk of death of women diagnosed with breast cancer in Europe (EUROCARE) vs. US (SEER), Model 1 Model 2 Model 3 Model 4 age follow-up + surgery + stage + n examined nodes SEER EUROCARE 1.37* 1.20* 1.12* 1.07 age: <55, 56-65, 66+ follow-up: 1,2,3,4,5 years stage: T1N0M0, T2-3N0M0, T1-3N+M0, T4M0, M1, not specified n examined nodes: 1-9, 10-14, 15+, not available *= p<=0.05

24 Nuovi problemi Gli studi high resolution sono costosi e lenti Misurare l efficacia dei trattamenti Ruolo prognostico delle nuove variabili biologiche Follow-up clinico Risultati up-to-date

25 Survival for Hepatocellular Carcinoma by treatment El-Serag et al, J Hepatol, 2006

26 Call ERA-NET on optimisation of the use of cancer registries for cancer research purposes. Improve the linking and efficient integration of national/regional programmes for cancer registration for better data collection and registry coverage, optimised use of valuable cancer data, samples and resources in support of research disease management and amelioration of cancer control. Activities in the new member states are particularly encouraged.

27 Public Funding for Research (Source : ERA Key Figures 2005, EC) Mio Euro Germany France UK Italy EU Commission Spain Netherlands Sweden Austria Belgium Denmark Finland Poland Portugal Greece Czech rep. Ireland Hungary Slovenia Slovakia Lithuania Estonia Malta Luxembourg Cyprus Latvia China Japan United States Restructuring a fragmented ERA

28 Public Funding for Research (Source : ERA Key Figures 2005, EC) Mio Euro Germany France UK Italy EU Commission Spain Netherlands Sweden Austria Belgium Denmark Finland Poland Portugal Greece Czech rep. Ireland Hungary Slovenia Slovakia Lithuania Estonia Malta Luxembourg Cyprus Latvia China Japan United States Restructuring a fragmented ERA EU27

29 Coordination of national programmes Overview FP7 ERA-NET Like in FP6: Coordination of programmes MS agree and fund joint calls/programmes EU funding only for coordination ERA-NET Plus New in FP7: Top up of a single joint call MS contribute to a joint trans-national call 2/3 EU funding for research: 1/3 of the joint call Art. 169 Full integration of national programmes Scientific and financial: strong EU funding Single implementing structure

30 ERA-NET Objective To develop and strengthen the coordination of public research programmes carried out at national or at regional level. Programmes should be understood as entire research programmes, or parts of such programmes, or similar initiatives having the following characteristics: 1. be strategically planned 2. be carried out at national or regional level 3. be financed or managed directly by national or regional public bodies, or by structures closely related (e.g. agencies)

31 Chindia United States European Union United in Diversity

32 European Population-Based Cancer Registries for Research and Cancer Control EUCARES

33 Participant Institutions 1 (Coord.) Istituto Superiore di Sanità Italy 2 Alleanza contro il Cancro Italy 3 Italian Association of Cancer Registries Italy 4 Ministry of Public Health Belgium 5 Oncosuisse Switzerland 6 Ministry of Health Czech Rep. 7 Departamento de Salud de Navarra Spain 8 Comunidad Autonoma de la Region de Murcia Spain 9 Instituto de Salud, Carlos III, Madrid Spain 10 Institut de Vielle Sanitaire, Paris France 11 Institut National du Cancer France 12 Cancer Society of Finland Finland 13 Association of Comprehensive Cancer Centres Netherlands 14 National Coordination for Oncological Diseases Portugal 15 Latvian Council of Science Latvia 16 National Authority for Scientific Research Romania 17 Cancer Research UK UK 18 Department of Health UK

34 Principali problemi nell uso dei dati dei registri Ritardo nella disponibilità dei dati (5-10 anni dal periodo di diagnosi) Mancanza di importanti informazioni diagnostiche, biologiche e cliniche Frammentazione delle fonti dei dati (circa 100 registri in Europa) Copertura parziale della popolazione Differenze nella qualità della registrazione Protezione della privacy Collegamento tra ricerca e decisioni di politica sanitaria

35 Obiettivi Generali Sostenere l estensione a tutti i paesi Europei della registrazione con alti livelli di qualità Coordinamento delle attività per ampliare l informazione raccolta dai registri tumori Integrazione dei dati dei registri in una banca dati comune, disponibile per la ricerca Europea. A lungo termine... costituire una struttura permanente (European Cancer Intelligence Network - ECIN) gestita da un consorzio di paesi finanziatori.

36 Obietivi Specifici Rafforzare il coordinamento internazionale su: miglioramento della codificca, standardizzazione e qualità dei dati; formazione; rilevazione di nuove variabili relative alla diagnosi, stadiazione e trattamento, collegamento con database clinici linkage tra dati dei registri e banche biologiche; indicatori sul cancro in relazione a fattori socio-economici; misura dell impatto della prevenzione e dei programmi di screening; sviluppo di metodi statistici per il cancer control ; diffusione e comunicazione dei risultati della ricerca basata sui registri.

37 Work package Work package title Work Package Tasks WP1 Management Task 1.1 Coordination Task 1.2 Enlarging EUCARES partnership WP2 Establishing the basis for trans-national funding WP3 WP4 WP5 Increasing the quality of data Broadening the information coverage Supporting methodological research Task 3.1 Quality control of cancer registry data Task 3.2 Coordinating training activities Task 4.1 Collection of more detailed clinical data Task 4.2 Cancer registries and biobanks Task 4.3 Monitoring of screening programs impact Task 4.4 Cancer control indicators and socioeconomic factors Task 5.1 Cancer burden estimation and projection Task 5.2 Statistical methods for relative survival WP6 Increasing data availability Task 6.1 ECIN: privacy/policy issues Task 6.2 ECIN: technical infrastructure Task 6.3 Diffusion, Dissemination and Communication

38 Phase 1 Phase 2 Task 1 Selection National Funding Task 2 Task 3 Task 4 Task 5 Task 6 Task 7 Task 8 Joint activ. 1 Joint activ. 2 Joint activ. 3 Joint activ. 4 Joint activ. 5 Joint activ. 6 Programme 1 Programme 2 Programme 3 Programme 4 Task 9 Task 10 European Cancer Intelligence Network

39 Uso delle risorse in ERA-NET Fondi ERA-NET: solo per cooperazione e coordinamento Fondi Nazionali o Regionali per l attuazione dei programmi di ricerca Fondi disponibili: 2,000,000 2 progetti in competizione

40 Conclusioni Potenziamento della capacità informativa Crescente esposizione Esigenze di standardizzazione Maggiore integrazione a livello Europeo?

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