title: Networking for ovarian rare tumors: a significant breakthrough improving disease management.
abstract: BACKGROUND
  Rare ovarian tumors represent >20% of all ovarian cancers. Given the rarity of these tumors, natural history, prognostic factors are not clearly identified. The extreme variability of patients (age, histological subtypes, stage) induces multiple and complex therapeutic strategies.
  
  
  METHODS
  Since 2011, a national network with a dedicated system for referral, up to 22 regional and three national reference centers (RC) has been supported by the French National Cancer Institute (INCa). The network aims to prospectively monitor the management of rare ovarian tumors and provide an equal access to medical expertise and innovative treatments to all French patients through a dedicated website, www.ovaire-rare.org.
  
  
  RESULTS
  Over a 5-year activity, 4612 patients have been included. Patients' inclusions increased from 553 in 2011 to 1202 in 2015. Expert pathology review and patients' files discussion in dedicated multidisciplinary tumor boards increased from 166 cases in 2011 (25%) to 538 (45%) in 2015. Pathology review consistently modified the medical strategy in 5-9% every year. The rate of patients' files discussed in RC similarly increased from 294 (53%) to 789 (66%). An increasing number (357 in 5 years) of gynecologic (non-ovarian) rare tumors were also registered by physicians seeking for pathological or medical advice from expert tumor boards.
  
  
  CONCLUSIONS
  Such a nation-wide organization for rare gynecological tumors has invaluable benefits, not only for patients, but also for epidemiological, clinical and biological research.
authors.affiliation: ARCAGY-GINECO, Centre Cancers de la Femme et Recherche Clinique, Paris.
authors.forename: N
authors.initials: N
authors.lastname: Chiannilkulchai
authors.affiliation: Departments of Cancer Medecine.
authors.forename: P
authors.initials: P
authors.lastname: Pautier
authors.affiliation: Biopathology, Gustave Roussy, Villejuif.
authors.forename: C
authors.initials: C
authors.lastname: Genestie
authors.affiliation: Departments of Gynecological Surgery, Hôpital Européen Georges Pompidou.
authors.forename: A S
authors.initials: AS
authors.lastname: Bats
authors.affiliation: Pathology, Hôpital Cochin, AP-HP, Faculté deMédecine, Université Paris-Descartes, Paris.
authors.forename: M C
authors.initials: MC
authors.lastname: Vacher-Lavenu
authors.affiliation: Department of Pathology, University Hospital, Lyon.
authors.forename: M
authors.initials: M
authors.lastname: Devouassoux-Shisheboran
authors.affiliation: Department of Pathology, Centre Léon-Bérard, Lyon.
authors.forename: I
authors.initials: I
authors.lastname: Treilleux
authors.affiliation: Departments of Oncology.
authors.forename: A
authors.initials: A
authors.lastname: Floquet
authors.affiliation: Pathology, Institut Bergonié, Bordeaux.
authors.forename: S
authors.initials: S
authors.lastname: Croce
authors.affiliation: Departments of Onco-Surgery.
authors.forename: G
authors.initials: G
authors.lastname: Ferron
authors.affiliation: Pathology, Institut Claudius Regaud, Toulouse.
authors.forename: E
authors.initials: E
authors.lastname: Mery
authors.affiliation: Departments of Gynecological Surgery.
authors.forename: C
authors.initials: C
authors.lastname: Pomel
authors.affiliation: Pathology, Centre Jean Perrin, EA 4677, University of Auvergne, Clermont-Ferrand.
authors.forename: F
authors.initials: F
authors.lastname: Penault-Llorca
authors.affiliation: Department of Oncology, Centre Eugène Marquis, Rennes.
authors.forename: C
authors.initials: C
authors.lastname: Lefeuvre-Plesse
authors.affiliation: Department of Pathology, University Hospital, Rennes.
authors.forename: S
authors.initials: S
authors.lastname: Henno
authors.affiliation: Departments of Gynecological Oncology.
authors.forename: E
authors.initials: E
authors.lastname: Leblanc
authors.affiliation: Pathology, Centre Osacar lambret, Lille.
authors.forename: A S
authors.initials: AS
authors.lastname: Lemaire
authors.affiliation: Departments of Pathology.
authors.forename: G
authors.initials: G
authors.lastname: Averous
authors.affiliation: Oncology and Hematology, Hôpitaux Universitaires de Strasbourg, Strasbourg.
authors.forename: J E
authors.initials: JE
authors.lastname: Kurtz
authors.affiliation: Department of Adult Medical Oncology, Centre Léon-Bérard & University Claude Bernard Lyon I, Lyon, France.
authors.forename: I
authors.initials: I
authors.lastname: Ray-Coquard
mesh_terms: D019468:Disease Management; D005260:Female; D006801:Humans; D015994:Incidence; D010051:Ovarian Neoplasms / Q000628:therapy*
keywords: clinical practice guidelines; gynecological rare cancers; national network; ovarian rare tumors; reference centers