A Study of Auditory Processing in Individuals with Rett Syndrome

What is the purpose of the study?

This study uses electroencephalography (EEG) to investigate how the brain processes information from our senses. Our goal is to find markers of brain activity for assessing cognition in Rett syndrome.

Who can participate?

Individuals with a diagnosis of Rett syndrome and genetically confirmed MECP2 mutation are eligible to participate. Individuals must also be past the clinical regression stage, have no known hearing impairment, and have no additional genetic or neurological diagnoses other than Rett syndrome. 

What are participants asked to do?

Study participants complete an electroencephalogram (EEG), which is a safe and non-invasive way to record brain activity. During the EEG session, participants listen to tones through headphones. We also ask a parent to complete surveys and an interview assessment that includes questions about their child’s symptoms, daily functioning, and behaviors. 

The study visit takes between 3-4 hours and participants are paid $18 per hour for their time.

Where is the study taking place?

Study visits occur at the University of Rochester Cognitive Neurophysiology Lab at 430 Elmwood Avenue, Rochester, NY 14620. 

The study team can also accommodate in-home study visits and participation at family meetings or conferences. 

Contact the study team:

Jamison Seabury, PhD student
Email: Jamison_Seabury@urmc.rochester.edu
Phone: 315-663-4159

University of Rochester Rett Syndrome Education and Research Day, 2020