title: Improving treatment results with reference centres for rare cancers: where do we stand?
abstract: Rare adult cancer (RAC) is characterised by an incidence of less than six cases per 100,000 people per annum; 4,300,000 patients in the European Union are living with rare cancer (22% of all new human cancers). These cancers are linked with worse survival rates than 'frequent' tumours (5-year survival: 47% for RAC against 65% for 'common' cancers), mainly because of: (1) delays in obtaining an accurate diagnosis, (2) inadequate treatments given in curative phases and (3) restricted opportunities for patients to participate in clinical trials because of the lack of support for dedicated trials for this disease group from both academic and industrial sponsors. Although quantitative studies to measure the socioeconomic burden of RACs as a whole are still lacking, the increasing fragmentation of all cancers into molecular subgroups implies a substantial increase in the number of RACs and their associated socioeconomic burden. To answer this urgent and growing need, some countries, cooperative groups, and cancer institutes delineated national and/or regional organisations to promote quality management for RACs. Currently, the European Union (EU) is supporting an official EU call to organise a European network dedicated to RACs. The goals will be to pool the vast knowledge and expertise of the 67 EU clinical reference centres and to cover ten rare adult solid cancer domains across more than 18 countries in order to deploy an integrated, EU-wide capacity towards accelerated innovative treatments and care for RACs while empowering patients. This article will summarise these experiences and the potential benefit for patients.
authors.affiliation: GINECO/TMRO Network, Centre Léon Bérard & Université Claude Bernard, Lyon, France. Electronic address: isabelle.ray-coquard@lyon.unicancer.fr.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Ray-Coquard
authors.affiliation: Assistance Publique Hopitaux de Paris & Université Paris Descartes Paris France, France.
authors.forename: Eric
authors.initials: E
authors.lastname: Pujade Lauraine
authors.affiliation: Gustave Roussy Cancer Campus, Villejuif, France.
authors.forename: Axel
authors.initials: A
authors.lastname: Le Cesne
authors.affiliation: Gustave Roussy Cancer Campus, Villejuif, France.
authors.forename: Patricia
authors.initials: P
authors.lastname: Pautier
authors.affiliation: Assistance Publique Hopitaux de Paris - Hôpital Cochin Paris France.
authors.forename: Marie Cecile
authors.initials: MC
authors.lastname: Vacher Lavenue
authors.affiliation: Fondazione IRCSS Istituto Nazionale dei Tumori, Milan Italy.
authors.forename: Annalisa
authors.initials: A
authors.lastname: Trama
authors.affiliation: Fondazione IRCSS Istituto Nazionale dei Tumori, Milan Italy.
authors.forename: Paolo
authors.initials: P
authors.lastname: Casali
authors.affiliation: Institut Bergonié, Département of Medical Oncology, Bordeaux, France.
authors.forename: Jean Michel
authors.initials: JM
authors.lastname: Coindre
authors.affiliation: GSF-GETO/NETSARC, Centre Léon Bérard & Université Claude Bernard, Lyon, France.
authors.forename: Jean Yves
authors.initials: JY
authors.lastname: Blay
mesh_terms: D000328:Adult; D002173:Cancer Care Facilities; D002986:Clinical Trials as Topic; D004812:Epidemiologic Methods; D005060:Europe / Q000453:epidemiology; D005062:European Union; D005260:Female; D006040:Goals; D006285:Health Planning; D006288:Health Planning Organizations; D006801:Humans; D007391:International Cooperation; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000628:therapy*; D010348:Patient Care Team; D035583:Rare Diseases / Q000401:mortality / Q000628:therapy*; D012017:Referral and Consultation
keywords: Cancer Reference centre; Cancer network; Rare cancer; Survival