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Welcome to the web site for the Fragile X Newborn Screening Study!

In this study, researchers will offer voluntary fragile X screening at UNC Hospitals to 15,000 mothers and their newborns. Fragile X syndrome (FXS) is the leading inherited cause of intellectual disability and the most common known cause of autism. The project also identifies babies who carry the fragile X gene change but do not have fragile X syndrome. The research project will, evaluate the consent process for screening, study the early development of children with fragile X syndrome and children who are fragile X carriers, and learn more about how families adapt to fragile X.

The purpose of this site is to provide more information about fragile X, newborn screening, and the study itself. If you have additional questions, please feel free to contact the project.
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  For technical assistance, please contact the Webmaster.

 
The Fragile X Newborn Screening Study is supported by the Eunice Kennedy Shriver National Institute for Child Health and Human Development (P30 HD003110-S1); the National Human Genome Research Institute’s Ethical, Legal, and Social Implications Research Program (5P50HG004488); Centers for Disease Control and Prevention in conjunction with the Association for Prevention Teaching and Research (Cooperative Agreement No. U50/CCU300860, Project TS-1470); the National Newborn Screening and Genetics Resource Center, a cooperative agreement between the Maternal and Child Health Bureau, Genetic Services Branch and the Department of Pediatrics, University of Texas Health Science Center at San Antonio; Health Resources and Services Administration (U32-MC00148); and the National Center of Research Resources, National Institutes of Health (UL1RR02574).