CIDD Fragile X Study is open to children 0 - 6 months old who have a diagnosis of Fragile X Syndrome.
The primary aim of this study is to examine the earliest brain changes seen in brain structure and tissue related to fragile X syndrome (FXS). The study will investigate how early brain development in FXS differs from brain development in typically developing and autistic-non FXS children. This study is funded by the National Institute of Health.
This multi-center study involves the collaboration of two sites which are part of an NIH-funded network (University of North Carolina at Chapel Hill, and Washington University in St. Louis, MO). At UNC, the lead investigator is Heather Cody Hazlett, PhD., she is well known in the field of developmental disabilities, and is currently assisting and leading four studies within the field of developmental disabilities.
Recruiting: Currently, we are searching for 30 participants in the US who meet the following criteria:
* Are between 0-6 months of age (parents who are expecting may also be eligible)
* Have diagnosis of fragile X
Once a family is enrolled in this study, they will travel to Chapel Hill, NC for a comprehensive series of developmental, non-invasive assessments completed on the infant at the 6, 12 and 24 month time periods. Also, during this trip the infant will receive an MRI scan while they sleep. Between trips to Chapel Hill there will be phone conversations, genetic and environmental data collection.
There is no cost for family participation. All travel and lodging costs are reimbursed by the study, and any services the study provides are at no charge to the family. Families will receive feedback on the assessments and each MRI scan. The family will also receive $150 for each completed visit.
