Rett Syndrome

Pre-symptomatic Biomarkers of Rett Syndrome in Children with MECP2 Mutations

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Goals of this research:

Along with the International Rett Syndrome Foundation (IRSF) we are aiming to research the early progression of Rett syndrome.

Who is eligible?

  • Infants who have tested positive for MECP2 mutations in newborn genetic screening who have yet to show symptoms of Rett syndrome

  • Infant girls between the ages of 6 months and 4 years who do not have a MECP2 mutation to serve as controls

    • ^can put in the specific ages of controls we are looking for

What does participation involve?

You will be asked to commit roughly 3 years to this study in which you will come to UNC’s campus every 3-6 months to undergo an EEG and behavioral assessments of your child.

You will receive:

All travel costs to Chapel Hill, North Carolina will be covered by the study along with compensation of up to $INSERT NUMBER

Contact to participate:

If you are interested in enrolling or have any questions, please fill out the interest form OR reach out to our study coordinator:

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