The National Fragile X Survey

In 2007, RTI International, under the leadership of Don Bailey, PhD, and with support from the Centers for Disease Control (CDC) launched the National Fragile X Survey. In 2009, RTI began to publish the results of that survey and to comment on their possible significance and meaning.

The National Fragile X Foundation, which played an important role in the dissemination of the original survey, is now engaged in analyzing the results with an eye towards answering the following questions for the following three segments of the Fragile X community:

• Families: What might this mean to me and my family?
• Clinicians: What might this mean to how I provide treatment/therapy?
• Researchers: What might this say about areas that have the potential for further research?

“The survey is one of the most comprehensive assessments of the range of conditions associated with FMR1 expansions conducted to date, and the large number of families enrolled greatly enhances the ability to generalize the findings. Some of the early findings, such as those regarding the challenges experienced by carriers of the FMR1 premutation, have important implications for health care policy and have opened important new areas of scientific inquiry.” 
– Len Abbeduto, PhD, University of Wisconsin & Co-Chair NFXF Scientific and Clinical Advisory Committee

"The FX family survey is important because it will help us better understand existing problems and needs. This will enable us to develop more effective approaches to improving support, diagnosis and treatments."
- Karen Usdin, PhD, National Institutes of Health & Member of the NFXF’s Scientific and Clinical Advisory Committee

Initial Findings and Published Articles About and From the Fragile X Survey
       - Please note that many professional journals will require a fee to view an article

• Survey Results - November 2009
• Robert Miller, NFXF Executive Director on “Why is the Family Survey Important?” – September 2009
• No Change in the Age of Diagnosis for FXS: Findings from a National Parent Survey – July, 2009
• Available online at www.pediatrics.org
• Co-Occurring Conditions Associated With FMR1 Gene Variations – August, 2008
• Available online at http://www3.interscience.wiley.com/journal/117928899/grouphome/home.html
• Functional Skills of Individuals with Fragile X: A Lifespan Cross-Sectional Approach – July, 2009
• Available online at http://www.aamr.org/content_582.cfm?navID=155
• Don Bailey Discusses the Survey in a Foundation Quarterly column – July 2008

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