We invite you to take part in a research study sponsored by the National Institutes of Health and Johns Hopkins University Bloomberg School of Public Health. If you have Klinefelter syndrome (also known as XXY or 47,XXY) and are 14 years or older, please read this notice 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?
You can take part if you have XXY and are at least 14 years old. If you are 14-17 years old, a parent or guardian also has to give his/her permission.
What is involved in this study?
There is one survey that takes about 30-40 minutes to finish. The survey asks for your thoughts and feelings about having KS. The survey also asks questions about your everyday life.
What are the risks of the study?
There are no physical risks to you from taking part in this study. Some of the topics covered in the survey are sensitive or personal. There is a risk that taking the survey may cause you to become concerned or upset. If this happens, please contact the researchers at the information listed below so that they can refer you to a health care provider who can help you. If you are very worried about the chance that you may become upset, you do not have to take this survey.
Are there benefits to taking part in the study?
There are no personal benefits to you from taking part in this study. However, your 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 I be paid?
You will not be paid for participating in this study.
Do I have to take part?
No, you do not have to take part in this study if you do not want to. You can stop taking the survey at any time, or skip any question(s) that you do not want to answer.
Who else will know that I am in the study?
The study is completely anonymous, so no one else will know that you are in the study. We do not ask for your name on this survey. No researcher will ever have access to your 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 you will not be identified.
How do I take part?
The survey can be done online or through the mail. If you would like to fill out the survey on paper rather than online, contact Amy Turriff at the contact information listed below. She will mail you a copy of the survey along with a stamped return envelope. Any contact information you give the researchers so they can send you a survey will be destroyed after it is mailed to you and will not be linked to your responses.
How can I learn about the results of this study?
After the study is completed, we plan on posting a short summary of our results on the support network websites or clinic website where you learned about this study. Please check the website in the future for this information.
Problems or Questions?
If you have any problems or questions about this study or about your rights as a participant, please contact the researchers. If you have any concerns about your XXY or about issues brought up by this survey, please contact the researchers.
Thank you for your time and interest! Please print a copy of this information to keep for yourself.