Prospective web-based collection of sarcoma cases diagnosed and treated in France: Experience of the NetSarc network of the French Sarcoma Tumor Boards.

Session Type and Session Title: 
General Poster Session, Sarcoma
Abstract Number: 


J Clin Oncol 30, 2012 (suppl; abstr 10056)
Francoise Ducimetiere, Jean-Yves Blay, Axel Le Cesne, Binh Bui Nguyen, Nicolas Penel, Emmanuelle Bompas, Francois Gouin, Florence Duffaud, Jean-Michel Coindre, Maria Rios, Christine Chevreau, Jean-Emmanuel Kurtz, Nicolas Isambert, Philippe Anract, Sophie Piperno-Neumann, François Bertucci, Pierre Kerbrat, Cecile Guillemet, Celeste Lebbe, Isabelle Ray-Coquard, on behalf of the NetSarc Network; Centre Léon Berard, Lyon, France; University Claude Bernard Lyon I, Centre Léon Bérard, Lyon, France; Institut Gustave Roussy, Villejuif, France; Institut Bergonie, Bordeaux, France; Centre Oscar Lambret, Lille, France; Centre Rene Gauducheau, Nantes St Herblain, France; CHU Hotel Dieu, Nantes, France; La Timone University Hospital, Marseille, France; Institut Bergonié and Université Bordeaux Segalen, Bordeaux, France; Centre Alexis Vautrin, Vandoeuvre-lès-Nancy, France; Institut Claudius Regaud, Toulouse, France; Hospices Civils de Strasbourg, Strasbourg, France; Centre Georges François Leclerc, Dijon, France; Hopital Cochin Saint Vincent de Paul, Paris, France; Institut Curie, Paris, France; Institut Paoli-Calmettes, Marseille, France; Centre Eugène Marquis, Rennes, France; Centre Henri Becquerel, Rouen, France; APHP Hôpital Saint-Louis, University Paris 7 Diderot, Paris, France; Centre Léon Bérard, Lyon, France

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Abstract Disclosures


Background: The management of sarcomas, as for all rare tumors, is hampered by the limited dissemination of medical knowledge. Management within a specialized multidisciplinary sarcoma tumor board (STB) improves compliance to clinical practice guidelines. Since 2010, a national network with a dedicated system for referral, gathering the 26 regional STBs, is supported by the French NCI. Its objectives are to monitor the management of sarcomas and give equal access to expertise and innovative treatments to all patients with sarcoma. We report here the first experience of a web-based data collection from these STBs. Methods: The expected incidence of sarcoma in France is 6.1/105/year, ie 4000 new cases per year. A website collecting all files discussed in the 26 STBs was generated from Jan 2010 (www.netsarc.org). The prospective collection of clinical data, STB decision and patient follow-up was implemented in the national database (40 items). Results: 7472 patients were accrued during 2 years, 6202 (83%) had sarcoma, 2860 (46%) were new cases, representing 36% of expected incident cases. The number of new cases discussed in STB increased between 2010 and 2011 (+38%). Patients were referred to the STB (2010-2011; % of cases) prior 1) to biopsy (9%-15%), 2) to first surgery (34%-39%), 3) to adjuvant treatment (35%-34%), after treatment (14%-8%) and at time of relapse (8%-4%). 15% had a metastases at initial diagnosis. The R0+R1 resection rates for primary surgery were 55% vs 42% within vs outside the STB centers of NetSarc. 8% of declared patients were proposed to inclusion into a clinical trial. Conclusions: This web-based tool enabled the description of the activity of the STB at the national level. Clinical practices improved between 2010 and 2011, but 64% of new cases of sarcoma were not discussed in the referent STB prior to surgery. The yearly follow-up of the database will help to monitor evolution of clinical practices.