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In 2007, RTI International, under the leadership of Don Bailey, PhD, and with support from the Centers for Disease Control and Prevention (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:
National Fragile X Survey Results
"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
Learn more about Child Neurology.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
In addition to the main hospital, Children's has many convenient locations in other neighborhoods throughout the greater Pittsburgh region.
With myCHP, you can request appointments, review test results, and more.
For questions about a hospital bill call:
To pay your bill online, please visit UPMC's online bill payment system.
Interested in giving to Children's Hospital? Visit Children's Hospital of Pittsburgh Foundation's website to make a donation online.