Patient registry formed to track clinical course of hypoactive sexual desire disorder

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New findings from a European study show that women with low sexual desire and associated distress experience personal and emotional distress related to the sexual issue. The findings, presented today at the International Society for the Study of Women's Sexual Health (ISSWSH) 2010 Annual Meeting in St. Petersburg, Fla., are based on a survey of 5,098 women with low sexual desire and associated distress. In the study (DESIRE-), many women reported experiencing negative emotions, such as dissatisfaction with their sex life, guilt about sexual difficulties and distress about their sex life, frequently or always during the previous three months.

The DESIRE- (Desire and its Effects on female Sexuality Including Relationships) study identified 7,542 women with low sexual desire and associated distress. Among these women, 5,098 participated and were surveyed on a wide range of attitudes and behaviors relating to their experience of low sexual desire. The reports of their frequency and level of sexual desire over the last 12 months were significantly correlated with reports of their level of distress about their low sexual desire and with each of these negative emotional responses.

The DESIRE study methodology consisted of 65,129 women, ages 18-88 years, from France, Germany, Italy, Spain and the UK, participating in a demographically representative research panel. These women completed an initial screening comprised of the first four questions of the Decreased Sexual Desire Screener- (DSDS-). The DSDS is a five-question diagnostic tool that assists non-expert clinicians in the clinical diagnosis of generalized, acquired Hypoactive Sexual Desire Disorder (HSDD), with more than 85 percent accuracy. In total, 7,542 women answered "yes" to all four questions and did not attribute their desire problem to partner sexual issues or physical trauma and 5,098 women further chose to participate in the in-depth survey.

About the HSDD Patient Registry

To understand the natural course of HSDD in women, the New England Research Institutes in Watertown, Mass., is conducting the first-ever registry in female sexual health. The HSDD Registry for Women is a prospective, multicenter, observational study, which will provide data on the natural history and long-term consequences of HSDD.

"The HSDD Registry for Women is the first sexual medicine registry of its kind to investigate the history and clinical course of generalized, acquired Hypoactive Sexual Desire Disorder in women," said Ray Rosen, Ph.D., Chief Scientist of the New England Research Institutes. "With its in-depth analysis of medical co-morbidities, lifestyle factors and long-term outcomes, we expect the HSDD Registry to address a number of knowledge gaps surrounding HSDD in women."

Nearly one in 10 women report low sexual desire with associated distress, which may be HSDD, an often under-diagnosed condition that is defined as a decrease or lack of sexual desire that causes distress for the patient, may put a strain on relationships with partners, and is not due to the effects of a substance, including medications, or another medical condition.

"Many of the women I see with HSDD experience a high level of guilt and feelings of confusion," said Sheryl Kingsberg, Ph.D., President of ISSWSH, Chief of Behavioral Medicine at University Hospitals Case Medical Center, and professor in reproductive biology at Case Western Reserve University in Cleveland. "They also complain about the distance they feel between themselves and their partner. The emotional impact of HSDD is significant, so I am excited by the growing body of research being presented this year as it provides an in-depth look at this under-recognized but distressing condition."

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