Fertility in Individuals with Differences in Sex Development: Provider Knowledge Assessment

Area of Science:

• Reproductive Medicine
• Endocrinology
• Genetics

Background:

• Infertility is a significant concern for individuals with differences in sex development (DSD).
• Patients and families actively seek fertility counseling regarding DSD conditions.
• Congenital adrenal hyperplasia was excluded from this survey's scope.

Purpose of the Study:

• To evaluate the current fertility knowledge among specialists treating DSD patients.
• To assess the experiences of DSD specialists with providing fertility counseling.
• To identify areas for improved fertility education and resources for DSD care providers.

Main Methods:

• A survey was developed by the DSD-Translational Research Network (DSD-TRN) Fertility Preservation Workgroup.
• The survey was distributed to specialists across five professional organizations.
• Data from 110 completed surveys were analyzed.

Main Results:

• Most respondents were from pediatric urology, gynecology, and endocrinology.
• A majority of specialists reported discussing fertility potential with patients.
• Significant knowledge gaps were identified regarding specific DSD conditions, such as 46,XY gonadal dysgenesis.

Conclusions:

• While many DSD specialists possess some fertility knowledge, gaps persist.
• There is a clear need for enhanced education and resources for effective fertility counseling in DSD.
• Specialists expressed a strong desire for improved educational materials and support systems.