The results of a study into conditions associated with Fragile X Syndrome have recently been published. The study, by researchers at RTI International, involved surveying parents of children with Fragile X. ( 976 full mutation males, 259 full mutation females, 57 premutation males, and 199 premutation females). Parents were asked whether their children had been diagnosed or treated for developmental delay or eight other conditions: attention problems, hyperactivity, aggressiveness, self-injury, autism, seizures, anxiety, or depression.

Summary of Results

Full Mutation Males and Females

• Over 80% had been diagnosed or treated for attention problems.
• Most affected boys and many affected girls suffered from anxiety and hyperactivity.
• Eighty-five percent of males and 44 percent of females experienced two or more additional conditions.
• Individuals who had problems with attention, anxiety and hyperactivity were also more likely to have additional conditions such as autism, self injury and seizures, suggesting a clustering of conditions.

Carriers

Carriers were also found to have an increased likely hood of co-occurring conditions.

• Premutation (carrier) males were more likely than non FX affected males to have been diagnosed or treated for developmental delay, attention problems, aggression, seizures, autism, and anxiety.
• Premutation (carrier) females were more likely to have been diagnosed or treated for attention problems, anxiety, depression, and developmental delay.

Don Bailey, Ph.D., a Distinguished Fellow at RTI and director of research project says “Obviously carriers who are parents experience many challenges in raising a child with fragile X. This study suggests the possibility that carriers of fragile X may also have a higher biological susceptibility to things like anxiety or attention problems.”

The study was funded by a grant from the Centers for Disease Control & Prevention.

More information -
Study Finds People with Fragile X, Carriers Likely to Have Additional Conditions – RTI International – News Release – 9.17.2008

The study, by Bailey DB Jr, Raspa M, Olmsted M, Holiday DB. 2008, is entitled. “Co-occurring conditions associated with FMR1 gene variations: Findings from a national parent survey”. Am J Med Genet Part A 146A:2060-2069, published in the Aug. 15 issue of American Journal of Medical Genetics free abstract available online or full report for a fee

Don Bailey, PhD, Distinguished Fellow in early childhood development at RTI received the 2004 Rosen Award for Outstanding Research in Fragile X Syndrome from the National Fragile X Foundation, and the 2006 Career Research Scientist Award from the Academy on Mental Retardation. He currently serves as President of the National Fragile X Foundation.

“Good onya” (translation: Well Done) Don – we appreciate your work.