If you are a parent of a son with Klinefelter syndrome (also known as XXY or 47,XXY) who is 14 years or older, please read this notice to learn about a research study sponsored by the National Institutes of Health and Johns Hopkins University Bloomberg School of Public Health. If you are willing to have your son participate, we will give you and your son access to the survey. At that time, he can read a study notice for participants to learn more about our study.
Why is this study being done?
The purpose of this study is to learn more about how adolescents and adults with Klinefelter syndrome (XXY) think and feel about living with XXY.
Who can take part in this study?
Your son can take part in this study if he has XXY and is at least 14 years old. If your son is 14-17 years old, you must also give your permission for him to take part.
What is involved in this study?
There is one survey that takes about 30-40 minutes to finish. The survey asks for your son’s thoughts and feelings about having XXY. The survey also asks questions about your son’s everyday life.
What are the risks of the study?
There are no physical risks of taking part in this study. Some of the topics covered in the survey are sensitive or personal. The survey will ask your son about his symptoms of XXY, including infertility, small testicles, and swollen breast tissue. There is a risk that taking the survey may cause your son to become concerned or upset. If this happens, please contact the researchers at the information listed below so that they can refer your son to a health care provider who can help. If you are very worried about the chance that your son may become upset, he does not have to take this survey.
Are there benefits to taking part in the study?
There are no personal benefits to your son from taking part in this study. However, his participation would tell us more about the experiences of people living with XXY. We hope that this knowledge will improve health care and counseling for individuals with XXY.
Will my son be paid?
Your son will not be paid for participating in this study.
Does my son have to take part?
No, your son does not have to take part in this study. He can stop taking the survey at any time, or skip any question(s) that he does not want to answer.
Who else will know that my son is in the study?
The study is completely anonymous, so no one else will know that your son is in the study. We do not ask for your son’s name on this survey. No researcher will ever have access to your son’s name. This study will not be part of any medical record or medical visit. When we report our research results, it will be done anonymously so that your son will not be identified.
How does my son take part?
The survey can be done online or through the mail. If your son would like to fill out the survey online, please contact Amy Turriff at turriffa@mail.nih.gov or 301-443-2634. At that time, Amy will give you the website address and password for your son to enter the survey. This method helps us make sure that if your son is 14-17 years old, we have a parent or guardian’s permission for your son to take part. If he would like to fill out the survey on paper rather than online, contact Amy and she will mail you a copy of the survey along with a stamped return envelope. Any contact information you give or your son gives to the researchers so they can send the website address or a survey will be destroyed after it is sent and will not be linked to your son’s responses.