ESPE Abstracts (2016) 86 WG1.6

Fertility in Persons with DSD, Results From the dsd-LIFE Study

Anna Nordenström


Berlin, Germany


Introduction: Disorders of sex development (DSD) describes conditions affecting gonadal and adrenal function and therefore to large extent affect fertility. In some cases the gonads have been removed due to risk of malignancy. Information to the patients about their fertility and treatment options have not been optimal in the past.

Objective: To describe fertility outcome in the different diagnostic groups of DSD and to assess to what extent assisted reproductive techniques were used. In addition we wanted to study if information about fertility have been given and how it was perceived by the patients.

Methods: 1061 individuals with conditions covered by the umbrella term DSD such as XY conditions with gonadal dysgenesis, androgen action or synthesis defects, XX conditions with gonadal dysgenesis, congenital adrenal hyperplasia, Klinefelter and Turner syndrome and individuals mixed gonadal dysgenesis. The study was conducted in 6 European countries (France, Germany, The Netherlands, Poland, Sweden and the United Kingdom). Information on partner, number of children, assisted reproduction or adoption and step children were collected. The patients were asked if they if they would have been interested in having children if assisted reproductive treatment had been available in the past or would be future. The patients were asked if they had received information about their fertility and to rate how satisfied they were with the information they had been given.

Results: Results on fertility for the different patient groups will be reported, if patients had received information on their fertility options and how they perceived the information.

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