New IDDRC Fragile X Syndrome Registry

September 23, 2010

A new collaborative research registry designed to expand research on fragile X syndrome and its associated disorders has just been developed by the Waisman Center at the University of Wisconsin-Madison and the Carolina Institute on Developmental Disabilities at the University of North Carolina-Chapel Hill. Each of these Intellectual and Developmental Disabilities Research Centers (IDDRCs) already has a research registry that has been a critical part of the success of their studies on the causes, course, consequences, and treatments of fragile X syndrome. By merging their existing registries and expanding enrollment to reach families across the U.S., a unique and valuable research resource will be created.

One of the registry's objectives is to foster partnerships with other AUCD member organizations to help the registry connect with individuals of all races and ethnic groups across the United States. This collaborative effort closely reflects the theme of the upcoming AUCD Conference "Going to Scale: Making What Works Accessible to All". Registry staff will have a poster and materials describing their outreach efforts at the AUCD conference.

According to Leonard Abbeduto, PhD, Associate Director for Behavioral Sciences and Director of the University Center for Excellence in Developmental Disabilities at the Waisman Center (WI UCEDD/LEND), "Promising pharmacological and psychosocial treatments for fragile X syndrome are emerging, but their evaluation has been hindered by a lack of access to large and diverse samples of research participants. [Through the registry] We are taking steps to address this problem and are serving as a national demonstration project". A key component of the registry is to detail ways in which problems and barriers are addressed in the creation of a multi-site collaborative registry. Abbeduto continued, "We will develop a "toolbox" that can be used to expand this registry and create new collaborative registries for other neurodevelopmental disorders by uniting other IDDRCs." Funding for this collaborative venture was provided by the National Institute for Child Health and Human Development.

For more information or to enroll in the registry, visit the Fragile X Research Registry website.