High Resolution data for rare cancers Annalisa Trama Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy ) WORKSHOP FOR A EUROPEAN HIGH RESOLUTION STUDY 6 th November 2012 SEA Malpensa Center, Milan Malpensa Airport

Information network on rare cancers To provide an operational definition of rare cancers, and a list of cancers that meet this definitionrare cancers To estimate the burden of rare cancers in Europeburden To improve the quality of data on rare cancersquality of data RARECARE

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 Information on rare cancers

Information network on rare cancers Should rare cancers be treated in centres of expertise? What are the characteristics of these centres?

Information network on rare cancers Analysis of the association between hospital case volumes and (stage-adjusted) survival A selection of cancer registries will send information on the hospital of diagnosis/treatment of cancer cases, on the stage and diagnostic investigation Participant national registries: Finland, Ireland, Bulgaria, Slovenia and Netherlands. Other registries can join Should rare cancers be treated in centres of expertise?

Information network on rare cancers What are the characteristics of these centres? Identification of qualification criteria for centers of expertise for rare cancers Consensus meeting High resolution study for a subgroup of rare cancers in collaboration with selected cancer registries

Information network on rare cancers Centres of expertise: examples of criteria Diagnosis: diagnostic investigation, stage at time of diagnosis, second opinion on pathology report.. Treatment: according to guideline, dedicated trials, free margins after surgery Follow-up: 1, 3, 5 year survival; recurrences

Information network on rare cancers Proposal for High Resolution Studies 1. Sarcomas 2. Neuroendocrine tumours 3. Head and neck tumors 4. Testicular cancers 5. Mesotheliama

Information network on rare cancers