CIDD Develops Our Fragile X World

October 31, 2011

Our Fragile X World team
Our Fragile X World team

Our Fragile X World is an international community of families and researchers dedicated to providing practical information about the world of fragile X. Through Internet and telephone based surveys, researchers at Our Fragile X World are gathering information about the needs and experiences of thousands of families from around the world who are affected by fragile X syndrome (FXS). 

In 2007, more than 1,200 families in the U.S. responded to the first National Fragile X Survey. This survey provided new knowledge about Fragile X and proved that parents are a valuable source of information. More information is needed to understand fragile X better, identify effective treatments, and help meet family needs.

Our Fragile X World was developed though a partnership with RTI International (a non-profit research institute in Research Triangle Park, NC) and CIDD.  CIDD researchers involved in the project include Dr. Anne Wheeler, Assistant Clinical Professor in the Department of Psychiatry at UNC, Kristin Cooley, graduate student in UNC's School of Psychology, and Erin Richard, graduate student in the Division of Speech and Hearing Sciences at UNC. RTI International researchers include Don Bailey, Ph.D., Distinguished Fellow at RTI International; Melissa Raspa, Ph.D., Murrey G. Olmsted, Ph.D., and Anne Edwards, B.S. Through this partnership with RTI International, CIDD is working to expand knowledge about the nature and consequences of fragile X syndrome, both for affected individuals and their families, and use this information to inform clinical science, support policy development, and improve professional practice.

Our Fragile X World is currently enrolling families. If you are a biological, step, adoptive, or foster parent of a child (of any age) with fragile X syndrome (either carrier/permutation or full mutation), you are invited to participate in Our Fragile X World. The project also welcomes other family members (e.g., grandparents) who have legal custody of a child with fragile X, as well as family members who are legal guardians of adult family members (e.g., adult sibling). Individuals who do not have any children with fragile X or do not have any children at all can enroll if they or their spouse is a carrier of fragile X or has the full mutation. This also includes individuals who are not married and do not have any children.

Once enrolled, families will be given opportunities to participate in voluntary, confidential surveys about their experiences with fragile X. These surveys will focus on topics such as adults with fragile X, success of new treatments, challenging behaviors, healthcare coverage, and policy needs to better support families.

For more information or to enroll in Our Fragile X World, visit www.ourfragileworld.org or contact Melissa Raspa, Ph.D. 1-866-214-2044; fragilex@rti.org