The following is a message from Dr. Sarika Peters at Vanderbilt University:
We at Vanderbilt University Medical Center are conducting a study of the clinical, immune, and stress markers of disease progression in MECP2 Duplication Syndrome. This study is essential for us in order to establish biomarkers of disease progression, as well as potential clinical endpoints for treatment trials.
Both boys and girls are being included in this study. At this time, we are including children between the ages of 3-18 years. We will be asking you to gather blood and saliva samples from your child, and then will be asking some questions related to their overall functioning, regression, seizures, and illnesses. We will follow-up with you once per year for a total of three years.
Although this study does not require an in person visit, if your child has participated in the natural history study, we do request your permission to have access to their clinical information.
At this time, I unfortunately do not have funds to pay for international shipments of samples.
For more information if you are interested, please email: firstname.lastname@example.org