1. Information network on rare cancers RARECARENet Annalisa Trama, Gemma Gatta Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy)

2. Information network on rare cancers RARECARE “ Surveillance of rare cancers in Europe” Aims To provide a definition of “rare cancers” and a list of cancers To estimate the burden of rare cancers in Europe To improve the quality of data in cancer registration To develop strategies for the diffusion of information among all the key players

3. Information network on rare cancers Rationale – Frequency Rare cancers are those cancers that present specific problem in clinical decision making, health care organization and clinical research because of their low frequency – Incidence Incidence better indicator for rare cancer Prevalence better indicator for non neoplastic rare diseases – Threshold for rarity = 6/100.000/year – 186 rare cancers DEFINITION OF “ RARE CANCER ”

4. Information network on rare cancers

5. RARE CANCERS, burden in Europe About 500,000 new cases 22% of all new malignancies About 4 millions alive with a diagnosis of rare cancers 24% of the total cancer prevalence

6. Information network on rare cancers RARE CANCERS, burden in Europe 5 YEAR RELATIVE SURVIVAL

7. Information network on rare cancers Rare cancers late or incorrect diagnosis limited access to appropriate therapies and clinical expertise limited information about the disease lack of clinical trials

8. RARECARENet

9. Information network on rare cancers building an information network to provide comprehensive information on rare cancers to the community at large Aim

10. Information network on rare cancers updated epidemiological indicators health care pathways for rare cancers centres of expertise clinical diagnosis and management (including very rare cancers) information for patients – list of centres of expertise – list of patient’s associations Information on rare cancers

11. Information network on rare cancers Work packages WP number WP name 1Coordination 2Dissemination 3Evaluation 4Information on epidemiology of rare cancers 5Information on centres of expertise for rare cancers 6Information on clinical management of rare cancers 7Information for patients with rare cancers

12. Information network on rare cancers Information on epidemiology (1) EUROCARE 5 100 cancer registries 22 european countries

13. Information network on rare cancers Information on epidemiology (2) Description of the health care pathway of rare cancers High resolution study with a selected group of cancer registries Analysis on the association between outcome and hospital caseload/volume of cases

14. Information network on rare cancers Information on centres of expertise for rare cancers Identification of qualification criteria for centers of expertise for rare cancers First consensus meeting High resolution study on a selected group of cancer registries EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States Final Consensus meeting

15. Information network on rare cancers information on diagnosis and management (1)

16. Information network on rare cancers information on diagnosis and management : VERY RARE CANCERS

17. Information network on rare cancers Information for patients with rare cancers … we have a lot of expectations List of patients associations dedicated to rare cancers List of centres of expertise for rare cancers Information materials on rare cancers

18. Information network on rare cancers Coordination with other initiatives

19. Information network on rare cancers

23. Who will work with us? Lisa Licitra - Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy ) Sabine Siesling - Comprehensive Cancer Centre the Netherlands Ian Kunkler - The University of Edinburgh, Scotland, United Kingdom Ellen Benhamou - Institut de Cancérologie Gustave Roussy, (France) Maja Primic-Žakelj - Institute of Oncology Ljubljana (Slovenia) Eero Pukkala - Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research (Finland) Harry Comber – Irish National Cancer Registry (Ireland) Nadia Dimitrova - Bulgarian National Cancer Registry (BNCR) Riccardo Capocaccia - Istituto Superiore di Sanità, Rome (Italy) European Cancer Patient Coalition (ECPC)

24. Information network on rare cancers Collaborating partners Rare Cancers Europe (RCE) European Partnerships for Action Against Cancer (EPAAC) European Society of Surgical Oncology (ESSO) European School of Oncology (ESO) Institut National de la Santé et de la Recherche Médicale (INSERM)- Orphanet Centre Léon Bérard Surveillance of Cancers in Europe (EUROCARE) European Society for Medical Oncology (ESMO) LeukaNET European Cancer Organisation (ECCO) European Society for Therapeutic Radiology and Oncology (ESTRO)

25. Information network on rare cancers Thank you for your attention www.rarecare.eu Annalisa.trama@istitutotumori.mi.it Gemma.gatta@istitutotumori.mi.it