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Studying brain development in infants with developmental disorders

To study the brain and behavioral development of infants with a diagnosis of Fragile X syndrome and Angelman syndrome. Infants will undergo an MRI brain scan (a safe, non-invasive way to take pictures of the brain) and behavior assessments starting at 6 months of age, with a follow-up visit at 24 months of age. We will track the brain and behavioral development of these infants, in order to detect early signs for these conditions.

Age & Gender

  • 1 months ~ 24 months
  • Male, Female, Gender Inclusive

Visit Availability

  • Standard business hours (M-F, 8-5)
  • Extended hours (M-F, early morning or evening)
  • Visits can be combined with regular clinical appointments

Location

United States (Nationwide)

What will be asked of you

This study will include two clinic visits at UNC Chapel Hill between 6-24 months of age. Each visit will include: a non-invasive MRI scan, behavior assessments, and parent-report questionnaires.

Incentives

Up to $200, Travel, hotel, gas/mileage, and food reimbursement, plus a copy of the MRI scan and a summary of behavioral assessments.

In-person visits:
2
Phone or online visits:
1
Total length of participation:
3 years

Looking for Specific Volunteers

Able to participate:

  • You have an infant with Angelman syndrome
  • You have an infant with Fragile X syndrome

Not eligible if:

  • None

Contact the Team

Visit Location

Contact & Visit Location

Primary Contact

Primary Visit Location

Carolina Institute for Developmental Disabilities
101 Renee Lynne Ct, Carrboro, NC 27510, USA

Additional Study Information

Principal Investigator

Mark Shen
Psychiatry - Carolina Institute for Developmental Disabilities

Study Type

Clinical or Medical
Observational

Study Topics

Behavior
Brain, Head, Nervous System
Child and Teen Health
Developmental
Genetics and Genetic Disorders
Mental and Emotional Health
Parents of Children
Physical Disability
Rare Diseases
Sleep
Language and Speech
Movement

IRB Number

20-2642

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