Actively Recruiting
Auditory EEG and Behavioral Assessments in Individuals With Rett Syndrome
Led by University of Rochester · Updated on 2026-05-06
60
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
This research studies how the brain processes sound in people with Rett syndrome, a genetic neurodevelopmental condition. It aims to better understand brain activity and clinical features related to Rett syndrome by observing brain responses to simple sounds and collecting detailed health and behavior information. The study is observational and includes both individuals with Rett syndrome and healthy controls matched by age and sex. Participants with Rett syndrome will undergo a noninvasive electroencephalogram EEG while listening to simple sounds through headphones. Parents or caregivers will fill out questionnaires and may participate in interviews about symptoms, communication skills, and daily functioning. Clinicians may also assess Rett syndrome severity. Control participants will have EEG recordings and complete a demographics questionnaire. No treatments or medications are given in this study. Participants will attend a single study visit lasting up to one day, during which EEG recordings and assessments take place. Researchers will measure brain response amplitude and timing to sounds, along with clinical scores such as Rett syndrome severity and communication ability. Safety and comfort during EEG are monitored. The total time commitment is limited to this one visit, supporting minimal disruption for participants.
CONDITIONS
Brief Title
Auditory EEG and Behavioral Assessments in Individuals With Rett Syndrome
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Have a clinical diagnosis of classic Rett syndrome
- Have a pathogenic MECP2 genetic variant confirmed by genetic testing
- Are past the clinical regression stage
- Are 2 years or older
- Are able to tolerate the noninvasive EEG recording
- Parent or caregiver is willing and able to provide permission and complete questionnaires and interviews
- Control participants must be neurologically healthy and 2 years or older
- Control participants must tolerate EEG recording
You will not qualify if you...
- Hearing impairment or hearing loss
- Medical conditions preventing safe EEG participation
- Inability to tolerate EEG procedures
- Any condition interfering with study participation or data quality
- Control participants with genetic, neurological, or psychiatric disorders
- Control participants with history of special education services
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