We are recruiting for a new research study to better understand Rett syndrome and MEPC2. This study is sponsored by RettSyndrome.org (IRSF).
Why is this study being done?
The goal of this project is to better understand the autonomic nervous system (ANS) in Rett syndrome and MEPC2 duplication syndrome. The ANS is part of the nervous system that controls the involuntary body functions such as breathing, heartbeat, blood pressure, temperature regulation, and digestion, among many other things.
Who can participate in this study?
• Anyone with the diagnosis of Rett syndrome and MECP2 who is not wheelchair dependent.
• Any healthy child with no diagnosis of any neurological disorder.
What do you and your child have to do to participate?
• You will answer a questionnaire about your child’s health.
• Your child’s medical record will be reviewed.
• Your child’s eyes will be measured using a special machine that measures the reactions of the pupil (central dark part of the eye). With this special machine we are able to quickly and painlessly obtain exact measurements of your child’s pupil’s response to light.
How will my family benefit from participation?
Participation comes at no cost to the families. Your child’s participation may help the investigators better understand the ANS in people with Rett syndrome and MECP2.
Texas Children’s Hospital parking will be validated with study participation.
For more information
If you are interested in learning more about this study, please contact the Blue Bird Circle Rett Center at (832) 822-RETT (7388).
Phone: (832) 822-1260