The international clinical practice guidelines for the care of individuals with Turner syndrome (TS) recommends counseling about the risk of infertility, potential family planning options and pregnancy risks in individuals with TS starting at a young age. However, individuals with TS and their families are not routinely counseled about fertility and the risks of pregnancy, nor are they consistently referred to specialists with expertise in fertility preservation. Despite clinical practice guidelines, little is known regarding the attitudes of individuals with TS and their parents/guardians regarding future fertility. As fertility preservation options for individuals with TS have increased over the past few decades, so has the engagement of the TS community in health services research. Through this two-part observational study, we aim to improve our understanding of attitudes of individuals with TS and their parents/guardians towards fertility, fertility preservation and options for building a family by developing and disseminating a fertility attitudes survey of adolescents and young adults (AYA) with TS and their parents/guardians.

For more details, please email us at nichd-pagprotocol@nih.gov or visit the Clinical Trials website.