993P - From a website to a national and regional reference centre network: the French experience for rare ovarian tumors

Date 29 September 2012
Event ESMO Congress 2012
Session Poster presentation I
Topics Ovarian Cancer
Presenter Isabelle Ray-Coquard
Authors I.L. Ray-Coquard1, P. Pautier2, J. Alexandre3, M. Vacher-Lavenu4, M. Fabbro5, A. Floquet6, F. Selle7, G. Ferron8, N. Chiannilkulchai9, E. Pujade-Lauraine3
  • 1Oncology, Centre Leon Berard, 69008 - Lyon/FR
  • 2Medecine Oncologique, Institut de cancerologie Gustave Roussy, 94805 - Villejuif/FR
  • 3Oncologie Médicale, Hôpital Hôtel Dieu, Paris/FR
  • 4Service D'anatomie Et Cytologie Pathologiques, Hôpital Cochin, Paris/FR
  • 5Médecine B2, CRLC Val d'Aurelle, 34298 - Montpellier/FR
  • 6Oncologie, Institut Bergonié, Bordeaux/FR
  • 7Medical Oncology, Hôpital Tenon, 75020 - Paris/FR
  • 8Médecine - Oncologie, Institut Claudius Regaud, Toulouse/FR
  • 9Arcagy, Paris/FR



Rare ovarian tumors (ROT) represent more than 20% of all ovarian cancers. Difficulties in histological diagnosis, absence of prognostic factors, evidence is not available for medical decision. In 2002, the GINECO group organized a dedicated website for sex cords (SCT) and germ cell (GCT) management. At the end of 2010, supported by the French NCI, a national network for all ROT was organized with 3 national and 21 regional expert centers (REC). The objectives are to monitor the management of ROT and give equal access to expertise (systematic second opinion for histological diagnosis) and innovative treatments to all patients with ROT.


The expected incidence of ROT in France is near 1000 new cases per year, including mostly SCT, GCT, mucinous (MC), clear cell (CCC), carcinosarcoma (CS), small cell carcinoma and borderline with invasive implants (BLT). A website collecting all files discussed in the REC was generated (www.ovaire-rare.org). The prospective collection of clinical data, dedicated multidisciplinary staff decision (MS), central pathological review and patient follow-up were implemented in the national database.


In 2011, 712 patients benefited of second opinion & were included by expert pathologists, representing 71% of expected incident cases. Major discordances concern 8% of patients. 294 patients gave informed consent & were included in the database before initial treatment in 229, (78 % of cases) or at the time of the first relapse in 65 (22%) : 85 (29 %) had SCT, 57 GCT, 61 BLT, 26 MC, 20 CCC, 45 other. 280 (96%) patients cases were discussed in dedicated MS. 18 patients entered a clinical trial. Virtual tumor banking is on going to develop molecular diagnosis (as FOXL2 for SCT).


This web-based tool supported by a national network including national and regional expert centers seems to be an efficient tool for the organisation of the management of rare ovarian cancer. The present project is under consideration for an EU project in 5 other countries interesting to duplicate such organisation.


All authors have declared no conflicts of interest.