WORKSHOP FOR A EUROPEAN HIGH RESOLUTION STUDY
6th November 2012
SEA Malpensa Center, Milan Malpensa Airport
High Resolution data for rare cancers
Annalisa Trama
Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy)
RARECARE
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To provide an operational definition of “rare cancers”,
and a list of cancers that meet this definition
To estimate the burden of rare cancers in Europe
To improve the quality of data on rare cancers
Information network on rare cancers
Information on rare cancers
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updated epidemiological indicators
health care pathways for rare cancers
centres of expertise
clinical diagnosis and management (including very rare
cancers)
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information for patients
Information network on rare cancers
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Should rare cancers be treated in centres of
expertise?
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What are the characteristics of these
centres?
Information network on rare cancers
Should rare cancers be treated in centres
of expertise?
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
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Information network on rare cancers
What are the characteristics of
these centres?
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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
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Diagnosis: diagnostic investigation, stage at time of
diagnosis, second opinion on pathology report..
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Treatment: according to guideline, dedicated trials,
free margins after surgery
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Follow-up: 1, 3, 5 year survival; recurrences
Information network on rare cancers
Proposal for High Resolution
Studies
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5.
Sarcomas
Neuroendocrine tumours
Head and neck tumors
Testicular cancers
Mesotheliama
Information network on rare cancers
Annalisa.trama@istitutotumori.mi.it
Gemma.gatta@istitutotumori.mi.it
Information network on rare cancers