What will happen in the study?

If you (as a participant who is 18 or older) or your child qualify, and you decide you want to be in this research study, you will come to Cincinnati Children’s for 2 to 4 visits over the next month. Each visit will be between 1 to 3 hours. There will be a total of 4 to 8 hours of testing over the course of all the visits.

The following is a list of some of the tests and procedures that may happen to you and/or your child during the study:

• Intelligence test:  a brief test examining current verbal or non-verbal abilities
• Behavioral and medical questionnaires:  questionnaires about medical history, family history, medication history, daily living activities, and present or past illnesses
• Physical exam and vital signs: height, weight, head measurements, body measurements, vision and hearing tests 
• Neuropsychological testing:  tests that measure mental abilities (thinking and response times), such as problem solving and attention
• Eye tracking:  you or your child will watch targets on a large screen while we measure and record eye movements using a camera-based system that follows eye gaze
• EEG studies:  you or your child will wear a cap with sensors that measures the electrical activity of the brain while you are at rest and while you are presented with various sounds
• Blood/saliva samples (optional):  we will take a small amount of blood/saliva from you or your child that will be banked for future research of FXS and similar conditions

Participants or parents/guardians interested in having their child participate will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.