Networking for ovarian rare tumors: a significant breakthrough improving disease management

Area of Science:

• Oncology
• Gynecologic Oncology
• Rare Cancers

Background:

• Rare ovarian tumors constitute over 20% of all ovarian cancers.
• The rarity of these tumors complicates the identification of natural history and prognostic factors.
• Patient variability in age, histology, and stage necessitates complex therapeutic strategies.

Purpose of the Study:

• To establish a national network for rare ovarian tumors to improve patient management and access to expertise.
• To prospectively monitor the treatment of rare ovarian tumors across France.
• To ensure equitable access to medical expertise and innovative treatments for all French patients.

Main Methods:

• Implementation of a national network with regional and national reference centers (RC) supported by the French National Cancer Institute (INCa) since 2011.
• Prospective monitoring of rare ovarian tumor management via a dedicated website (www.ovaire-rare.org).
• Inclusion of patients and discussion of cases in multidisciplinary tumor boards with expert pathology review.

Main Results:

• Over 5 years, 4612 patients were included, with annual inclusions increasing significantly.
• Expert pathology review and multidisciplinary tumor board discussions increased from 25% to 45% of cases.
• Pathology review annually altered medical strategy in 5-9% of cases, and RC discussions increased from 53% to 66%.

Conclusions:

• The nation-wide organization for rare gynecological tumors offers substantial benefits for patients.
• The network facilitates invaluable epidemiological, clinical, and biological research.
• Improved access to expert centers and multidisciplinary discussions enhances care for rare ovarian tumors.