Information for parents who are considering whether to talk about an extra X chromosome with their daughter and family members

<p><em>You are welcome to download this free document. We are evaluating these materials and would love to have feedback from you - please tell us what you liked and what we could do better. Feedback can be sent via email to: Sarah Wynn [sarah@rarechromo.org].</em></p> <p>Trisomy X (also known as Triple X syndrome) may be discovered when a mother undergoes prenatal screening (amniocentesis or CVS), or after birth if a child has their chromosomes tested as part of a medical investigation. When an extra X chromosome is discovered, parents have to decide whether to tell their daughter about this, and if so how to go about this. We found that this was an issue that concerned many parents but very little was known about how parents decide to tell their child or the process through which they do this.</p> <p>On the basis of interviews with members of affected families, we developed a booklet for parents to help them consider these issues, as well as a companion picture book for children. If you would like a hard copy of either or both of these booklets, please contact Sarah Wynn at the email address above.</p> <p>This work would not have been possible without the generous support of the Nuffield Foundation, and Unique. The research supporting this booklet was conducted at the University of Oxford and directed by Professor Dorothy Bishop and Professor Gaia Scerif.</p>