Nicolas Penel1, Jean-Michel Coindre2, Sylvie Bonvalot3, Antoine Italiano4, Agnès Neuville5, Axel Le Cesne6, Philippe Terrier7, Isabelle Ray-Coquard8, Dominique Ranchere-Vince9, Yves-Marie Robin10, Nicolas Isambert11, Gwennaël Ferron12, Florence Duffaud13, François Bertucci14, Maria Rios15, Eberhad Stoeckle16, Cécile Le Pechoux17, Cécile Guillemet18, Jean-Baptiste Courreges19, Jean-Yves Blay20. 1. Medical Oncology Department, Centre Oscar Lambret, 3 rue Combemale, 59020 Lille Cedex, France; SIRIC OncoLille Consortium, Clinical Research and Methodology Platform, 59037 Lille, France. Electronic address: n-penel@o-lambret.fr. 2. Pathology Department, Institut Bergonié, 229 Cours de l'Argonne, 33000 Bordeaux, France. Electronic address: j.coindre@bordeaux.unicancer.fr. 3. Surgery Department, Institut Gustave Roussy, 114 Rue Edouard Vaillant, 94800 Villejuif, France; Surgery Department, Institut Curie, 26 Rue d'Ulm, 75005 Paris, France. Electronic address: sylvie.bonvalot@curie.fr. 4. Medical Oncology Department, Institut Bergonie, 229 Cours de l'Argonne, 33000 Bordeaux, France. Electronic address: a.italiano@bordeaux.unicancer.fr. 5. Pathology Department, Institut Bergonié, 229 Cours de l'Argonne, 33000 Bordeaux, France. Electronic address: a.neuville@bordeaux.unicancer.fr. 6. Medical Oncology Department, Institut Gustave Roussy, 114 Rue Edouard Vaillant, 94800 Villejuif, France. Electronic address: Axel.LECESNE@gustaveroussy.fr. 7. Pathology Department, Institut Gustave Roussy, 114 Rue Edouard Vaillant, 94800 Villejuif, France. Electronic address: Philippe.TERRIER@gustaveroussy.fr. 8. Medical Oncology Department, Centre Léon Bérard, 28 rue Laennec, 69008 Lyon, France. Electronic address: isabelle.ray-coquard@lyon.unicancer.fr. 9. Pathology Department, Centre Léon Bérard, 28 rue Laennec, 69008 Lyon, France. Electronic address: dominique.ranchere-vince@lyon.unicancer.fr. 10. Pathology Department, Centre Oscar Lambret, 3 rue Combemale, 59020 Lille cedex, France. Electronic address: ym-robin@o-lambret.fr. 11. Medical Oncology Department, Centre Georges-François Leclerc, 1 Rue du Professeur Marion, 21000 Dijon, France. Electronic address: nisambert@cgfl.fr. 12. Department of Surgical Oncology, Institut universitaire du cancer Toulouse Oncopole, 1 avenue Joliot-Curie, IUCT-O, 31059 Toulouse Cedex 9, France. Electronic address: Ferron.Gwenael@claudiusregaud.fr. 13. Medical Oncology Department, Hôpital de la Timone, 264 Rue Saint-Pierre, 13385 Marseille, France. Electronic address: Florence.DUFFAUD@ap-hm.fr. 14. Medical Oncology Department, Institut Paoli Calmette, 232 Boulevard de Sainte-Marguerite, 13009 Marseille, France. Electronic address: bertuccif@ipc.unicancer.fr. 15. Medical Oncology Department, Centre Alexis Vautrin, 6 Avenue de Bourgogne, 54500 Nancy, France. Electronic address: m.rios@nancy.unicancer.fr. 16. Surgery Department, Institut Bergonie, 229 Cours de l'Argonne, 33000 Bordeaux, France. Electronic address: e.stoeckle@bordeaux.unicancer.fr. 17. Radiotherapy Department, Institut Gustave Roussy, 114 Rue Edouard Vaillant, 94800 Villejuif, France. Electronic address: Cecile.LEPECHOUX@gustaveroussy.fr. 18. Medical Oncology Department, Centre Henri Becquerel, Rue d'Amiens, 76000 Rouen, France. Electronic address: cecile.guillemet@chb.unicancer.fr. 19. RRePs and NetSarc networks, Institut Bergonié, 229 Cours de l'Argonne, 33000 Bordeaux, France. Electronic address: J.Courreges@bordeaux.unicancer.fr. 20. Medical Oncology Department, Centre Léon Bérard, 28 rue Laennec, 69008 Lyon, France. Electronic address: jean-yves.blay@lyon.unicancer.fr.
Abstract
PURPOSE: The optimal management of rare tumours (i.e. from accurate diagnosis to management in reference centres) is a public health challenge. In 2009, the French National Cancer Institute (INCa) identified and financially supported the two expert networks for pathological and clinical diagnosis and management of soft tissue tumours. METHODS: The activities of both networks were prospectively collected using a nationwide database (rreps.org). Data describing the diagnosis management of 863 successive cases of desmoids tumours (DT) were prospectively collected from 2010 to 2013 and analysed. RESULTS: The number of confirmed DT constantly improved from January 2010 to December 2013 (from 173 to 273 cases per year); the expected incidence ranged from 132 to 330 cases/year. The rate of cases diagnosed with core-needle biopsies and CTNNB1 mutational status analysis increased from 30.6 to 40.7% and from 87.8 to 94.1%, respectively. The mean delay for pathological diagnosis confirmation constantly decreased from 107 to 47 d. Among the 846 adult patients, 414 (48.9%) patients were treated by reference centres. The rate of patients managed by reference centres constantly increased with time from 36.9 to 49.5% since 2010. The median management time of the referral centres constantly decreased from 440 to 67 d. CONCLUSION: The two expert networks worked synergistically and improved diagnosis modalities of rare desmoid tumours at a national level. The impact of management by expert networks on the outcome will be prospectively analysed in the future.
PURPOSE: The optimal management of rare tumours (i.e. from accurate diagnosis to management in reference centres) is a public health challenge. In 2009, the French National Cancer Institute (INCa) identified and financially supported the two expert networks for pathological and clinical diagnosis and management of soft tissue tumours. METHODS: The activities of both networks were prospectively collected using a nationwide database (rreps.org). Data describing the diagnosis management of 863 successive cases of desmoids tumours (DT) were prospectively collected from 2010 to 2013 and analysed. RESULTS: The number of confirmed DT constantly improved from January 2010 to December 2013 (from 173 to 273 cases per year); the expected incidence ranged from 132 to 330 cases/year. The rate of cases diagnosed with core-needle biopsies and CTNNB1 mutational status analysis increased from 30.6 to 40.7% and from 87.8 to 94.1%, respectively. The mean delay for pathological diagnosis confirmation constantly decreased from 107 to 47 d. Among the 846 adult patients, 414 (48.9%) patients were treated by reference centres. The rate of patients managed by reference centres constantly increased with time from 36.9 to 49.5% since 2010. The median management time of the referral centres constantly decreased from 440 to 67 d. CONCLUSION: The two expert networks worked synergistically and improved diagnosis modalities of rare desmoid tumours at a national level. The impact of management by expert networks on the outcome will be prospectively analysed in the future.
Authors: Arcangelo Picciariello; M Rinaldi; M De Fazio; G Trigiante; V Papagni; V Bucaria; D F Altomare Journal: Int J Colorectal Dis Date: 2020-05-01 Impact factor: 2.571
Authors: Anne-Rose W Schut; Emma Lidington; Milea J M Timbergen; Eugenie Younger; Winette T A van der Graaf; Winan J van Houdt; Johannes J Bonenkamp; Robin L Jones; Dirk J Grünhagen; Stefan Sleijfer; Cornelis Verhoef; Spyridon Gennatas; Olga Husson Journal: Cancers (Basel) Date: 2022-06-16 Impact factor: 6.575
Authors: B Kasper; C Baumgarten; J Garcia; S Bonvalot; R Haas; F Haller; P Hohenberger; N Penel; C Messiou; W T van der Graaf; A Gronchi Journal: Ann Oncol Date: 2017-10-01 Impact factor: 32.976