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Rare ovarian tumors (ROT). Impact of an interactive website on medical practice and inclusions in a clinical trial. Results after 1 year.

5110 Background: ROT are by nature rare. The lack of experience outside specialized centers leads to wide variations in management and treatment. A specialized website ( www.ovaire-rare.org ) was developed in France in 2002. Objectives were: to delineate prognostic factors of these very rare diseases, to favor patient inclusion in a clinical trial available online, to provide access to online medical expert forum (disease-related) for complex cases, and finally to demonstrate the impact of these tools on improving medical practice.


METHODS
Since 04/2002, a prospective study accessible on the website has proposed inclusion of patients online. All new adult patients with ORT in first or second-line treatment were eligible (70 pts/year expected in France).


RESULTS
Since 2002, 30 patients have been included in the online clinical trial. 29 medical records were evaluated for initial treatment and for second opinion histological diagnosis. Patients characteristics were: median age 36y (16-69), FIGO stage I 60%, II 10%, III 20%, IV 10% (metastatic sites: liver 2, lung 2), median tumor size 11 cm (3-24), most frequent histology: adult granulosa (10/29), dysgerminoma (7/29). Second opinion histological diagnosis was validated for 24 pts. Discordance was total (no same tumor subtype, no same prognosis) for 7/24 (29%) and partial (same tumor, different prognosis) for 2/24 (8%). Second opinion changes initial diagnosis in 38% of the patients.


CONCLUSIONS
After one year, the use of the website is effective and enables to recruit patients with ROT. Histological discrepancies between initial diagnosis and second opinion suggest that this tool is useful for including patients in the clinical trial. The website provides very interesting data for a better knowledge of these rare tumors and will possibly help improve medical practice. No significant financial relationships to disclose.