Rationale of the rare cancer list: a consensus paper from the Joint Action on Rare Cancers (JARC) of the European Union (EU)

BackgroundThe Surveillance of Rare Cancers in Europe (RARECARE) project proposed a definition and a list of rare cancers. The Joint Action on Rare Cancers (JARC), launched by the European Union and involving 18 member states and 34 partners, promoted a wide consensus effort to review the list.Patien...

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Bibliographic Details
Published in:ESMO open 2020-03, Vol.5 (2), p.e000666, Article e000666
Main Authors: Casali, Paolo G, Trama, Annalisa
Format: Article
Language:English
Subjects:
cancer registries
incidence
Original Research
prevalence
rare cancers
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Summary:BackgroundThe Surveillance of Rare Cancers in Europe (RARECARE) project proposed a definition and a list of rare cancers. The Joint Action on Rare Cancers (JARC), launched by the European Union and involving 18 member states and 34 partners, promoted a wide consensus effort to review the list.Patients and methodsA group of experts was set up, including scientific societies, member state representatives of JARC, representatives of the European Reference Networks dedicated to rare cancers and rare cancer patient advocates. The definition and the list of rare clinical entities, based on the incidence data provided by two European projects (RARECARE and RARECAREnet), were rediscussed through a consensus meeting of the expert panel.ResultsBy consensus, it was reiterated that the best criterion for a definition of rare cancers is incidence, rather than prevalence. By consensus, the experts slightly modified the composition of the tiers of rare cancers, according to the definition based on an incidence threshold
ISSN:2059-7029
2059-7029
DOI:10.1136/esmoopen-2019-000666