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Information network on rare cancers RARECARENet

Information network on rare cancers RARECARENet. Annalisa Trama, Gemma Gatta Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy). RARECARE “ Surveillance of rare cancers in Europe”. Aims To provide a definition of “rare cancers” and a list of cancers

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Information network on rare cancers RARECARENet

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

  2. 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 cancerregistration • To develop strategies for the diffusion of information among all the key players

  3. definition of “rare cancer” • 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

  4. 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

  5. RARE CANCERS, burden in Europe5 YEAR RELATIVE SURVIVAL

  6. Rare cancers • late or incorrect diagnosis • limited access to appropriate therapies and clinical expertise • limited information about the disease • lack of clinical trials

  7. RARECARENet

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

  9. Information 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

  10. Work packages

  11. Information on epidemiology (1) EUROCARE 5 100 cancerregistries 22 europeancountries

  12. 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

  13. 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 Final Consensus meeting EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States

  14. information on diagnosis and management (1)

  15. Information for patients with rare cancers … we have a lot of expectations • Listofpatientsassociationsdedicatedto rare cancers • Listofcentresof expertise for rare cancers • Information materials on rare cancers

  16. Coordination with other initiatives

  17. 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) Eero Pukkala - Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research (Finland) Maja Primic-Žakelj - Institute of Oncology Ljubljana (Slovenia) 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)

  18. 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)

  19. Thank you for your attention www.rarecare.eu Annalisa.trama@istitutotumori.mi.it Gemma.gatta@istitutotumori.mi.it

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