NCT07569445 · University of Rochester
Auditory EEG and Behavioral Assessments in Individuals With Rett Syndrome
What this study is about
This observational research study is designed to learn more about how the brain processes sound in individuals with Rett syndrome. Participants will complete a noninvasive electroencephalogram (EEG) recording while listening to simple sounds through headphones.
View original scientific description
This observational research study is designed to learn more about how the brain processes sound in individuals with Rett syndrome. Participants will complete a noninvasive electroencephalogram (EEG) recording while listening to simple sounds through headphones. In addition, parents or caregivers will complete questionnaires and an interview about the participant's symptoms, communication abilities, daily functioning and overall health. The information collected from this study may help researchers better understand brain activity patterns and clinical features associated with Rett syndrome and support future research efforts.
Who can participate
This study lists these criteria on ClinicalTrials.gov. A study coordinator reviews eligibility during screening — this page does not determine whether you qualify.
Inclusion criteria
- Have a clinical diagnosis of classic Rett syndrome
- Have a pathogenic MECP2 genetic variant confirmed via genetic testing
- Are past the clinical regression stage
- Are within the eligible age range for the study (2 years or older)
- Are able to tolerate the noninvasive EEG recording
- Parent or caregiver is willing and able to provide parental permission and complete questionnaires and interviews
Exclusion criteria
- Experiences hearing impairment or hearing loss
- Presence of medical conditions that would prevent safe participation in EEG recording
- Inability to tolerate EEG procedures
- Any condition that in the opinion of the investigator would interfere with study participation or data quality Controls Inclusion Criteria:
- Neurologically healthy individuals ages 2 years or older
- Are able to tolerate the noninvasive EEG recording Exclusion Criteria:
- Experiences hearing impairment or hearing loss
- Medical history of genetic, neurological, or psychiatric disorders
- History of special education services
- Inability to tolerate EEG procedures
- Any condition that in the opinion of the investigator would interfere with study participation or data quality
Where
- Rochester, New York
Frequently asked questions
What is a clinical trial?
A clinical trial is a research study that tests new medical treatments, drugs, devices, or procedures to determine their safety and effectiveness. Trials are carefully designed and monitored to protect participants while advancing medical knowledge.
Is it safe to participate?
Clinical trials follow strict safety guidelines and ethical standards. Trials must be reviewed and approved, and participants are closely monitored by medical professionals throughout the study. You can withdraw at any time if you choose.
Will I be compensated?
Many clinical trials offer compensation for your time, travel expenses, and inconvenience. The specific compensation varies by study and will be discussed during the screening process. All study-related medical care is typically provided at no cost to participants.
Will I receive a placebo instead of treatment?
When effective treatment exists, participants typically receive either the standard treatment plus the study intervention, or the standard treatment plus placebo. You would not be denied effective care. Placebos are primarily used when no proven treatment is available, or in addition to standard care. Your trial consent form will clearly explain what treatments you may receive.
Can I leave a trial if I change my mind?
Absolutely. Participation in clinical trials is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty or loss of benefits to which you are otherwise entitled.
How long does a clinical trial last?
Trial duration varies widely depending on the study design and purpose. Some trials last just a few weeks, while others may continue for months or years. The study coordinator will provide specific timeline information during your screening call.
Data: ClinicalTrials.gov · synced May 6, 2026 · Source of record for eligibility and locations