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Tourette Syndrome Education and Research Program

THE PROPOSAL: An appropriation of $1.8 million (flat-funding) in the Department of Health and Human Services FY ’08 budget for the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention for the Tourette Syndrome education and research program.

WHAT IS TSA AND TOURETTE SYNDROME? Founded in 1972, the Tourette Syndrome Association is a membership driven, non-profit organization dedicated to providing comprehensive programs of education, research and personal services to all people who have Tourette Syndrome (TS) and their families. It provides programs and services through a national office located in Bayside, New York, and has 30 chapters and 300 support groups nationwide. TS is an inherited, neurobiological movement disorder, evidenced by motor and vocal tics that normally first appear during early childhood. It is estimated that approximately 200,000 people in the United States have substantially impairing TS and that many more have milder symptoms of the disorder. There is no known cure.

THE EDUCATION AND RESEARCH PROGRAM: The education program will continue to provide education and intensive training for the public, physicians, allied healthcare workers, and teachers about Tourette Syndrome. The objectives are to increase recognition and diagnosis, decrease the stigma, increase the provision of and improve the nature of treatments for those with Tourette Syndrome, decrease negative impacts on families dealing with the disorder, and improve academic outcomes for children with TS. The program will use many vehicles to achieve the above, including, (1) multi-track conferences where experts in the field will give lectures and workshops; (2) grand rounds in teaching hospitals; (3) new materials containing the most current information on TS; and (4) distribution of new and existing materials in written, video, and CD-ROM formats. The program will focus on reaching the target audiences in traditionally under-served communities.

To address important gaps in scientific knowledge regarding TS, the research component of the program will continue to seek and determine the prevalence of the disorder in the general population, any variations in prevalence among different subgroups, such as male and female, and the frequency of co-occurring disorders such as Attention Deficit-Hyperactivity Disorder and Obsessive-Compulsive Disorder. The research will improve upon previous more limited and isolated investigations of this issue by examining a large and varied population, using uniform criteria reflecting the most current knowledge in the field, and employing proven epidemiologic methods.