2010-07-01

August 17, 2010

2010-07-01
Recommended Practices for Treating Individuals with Fragile X               
Anne Wheeler, PhD, University of North Carolina
Project Summary:
In 2006 the National Center on Birth Defects and Developmental Disabilities awarded a grant to investigators at RTI International to develop a data base and conduct a national survey of families of children with fragile X syndrome (FXS). The project was highly successful, enrolling more than 1000 families who completed a comprehensive survey. Nine articles based on the survey data have been published or accepted for publication in peer reviewed journals. Most (94%) survey respondents agreed to allow their names to be kept in a long-term survey research registry and to be re-contacted for future studies, making this an invaluable resource for future research. This application requests funds to continue and expand this work. Through a partnership between the Center for Development and Learning at the University of North Carolina at Chapel Hill and RTI International, the overarching goal of the project is to expand knowledge about the nature and consequences of FXS, both for affected individuals and their families, and use this information to inform clinical practice and policy development. The project will: (1) re-contact and expand the current survey sample, focusing on recruitment of families from ethnic minority groups and families of recently diagnosed children; (2) design a new survey to gather new information about individuals with FXS and their families; (3) use internet and call-center capabilities to conduct the new survey; and (4) analyze and disseminate the results of the survey.