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UNC CIDD is recruiting infants with either Angelman syndrome (AS) or Fragile X syndrome (FXS) – under 24 months of age – for a new research study examining brain and behavioral development from 6 to 24 months of age in order to aid in the future development of better supports and treatments. You can help us identify the earliest brain and behavioral features of AS and FXS by participating in the first MRI research study of its kind.

Who is Eligible?

Infants between birth and 24 months of age with AS or FXS.

What Does Participation Involve?

  • Traveling to the University of North Carolina at Chapel Hill (UNC) for two in-person visits between 6 and 24 months of age.
  • Behavioral and cognitive assessments at each visit (at no cost to the family) – with a summary of results for the family.
  • A safe, non-invasive MRI brain scan during natural sleep (no anesthesia or sedation involved) – with a copy of the MRI for the family.

Goal of this Research

Studying the early brain and behavioral development of infants with AS and FXS could aid in the future development of better supports and treatments.

Compensation

All travel costs to Chapel Hill, North Carolina (airfare, hotel, rental car, meals) will be covered by the study. In addition, your family will be compensated up to $200 for participation in this study.

Questions

To enroll or ask questions, please contact:
Zumin Chen (study coordinator)
Phone: + 1 919-966-8032
This study is led by Principal Investigator: Mark Shen, PhD, Assistant Professor of Psychiatry & Neuroscience, UNC School of Medicine

 

Contact Us

For questions about the Angelman Syndrome Natural History Study or the LADDER Learning Network, contact Margaret DeRamus.

For questions about the CIDD Clinical Trials Program, contact Hannah Riehl.

For questions about the Brain Development Study of Infants with Angelman Syndrome & Fragile X Syndrome, contact Zumin Chen.