Families of Children with Fragile X Syndrome

Studies have shown that early identification is critical to early intervention and optimal development for children who are at risk for developmental delays. Thus, we are interested in learning about the early development of infants who may be at risk for developmental delays as well as those who are typically developing.

We are also interested in learning how young children with neurodevelopmental disorders develop over time. The ultimate goal of this study is to identify early developmental profiles to enable early detection and promote targeted early intervention services so children learn to their full potential.

We are currently recruiting families with children who meet one of the following criteria:

  • Children and infants 3 years old or younger who have been diagnosed with fragile X syndrome or FMR1 premutation
  • Children and infants younger than 5 years old who have been diagnosed with fragile X syndrome
  • Children who have previously participated in our infant study

Participants are compensated for their time. Participation for infants involves an assessment of the child’s developmental skills and an interview with the parent(s) regarding their perception of their child’s development. Participation for toddlers and young children involves assessments of cognitive, behavioral, language, and physiological functioning. For more information, please watch our introduction videos.

Please contact us by email or by phone at (803) 777-5676 if you have questions or are interested in participating in our study.


Learn how you can take part in our research