Bill > HR146

This bill, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013, aims to enhance the National Institutes of Health's (NIH) efforts concerning Tourette syndrome, a neurological disorder characterized by involuntary movements and vocalizations called tics. The legislation mandates that the Director of the NIH must expand, intensify, and coordinate existing programs and activities related to Tourette syndrome. A key provision requires the development of a comprehensive data collection system to track the incidence and prevalence of Tourette syndrome across the United States, including information on related conditions, and to gather data on the availability of medical and social services for affected individuals and their families, broken down by population and geographic region. Furthermore, the bill directs the NIH to award grants and contracts to establish between four and six "centers of excellence" in different regions of the country. These centers will focus on conducting both basic and clinical research into Tourette syndrome, covering its causes, diagnosis, prevention, and treatment, and will also be encouraged to raise awareness about research participation and provide referrals for patient care services. The NIH is also required to allocate a specific portion of its annual budget to support these Tourette syndrome-focused programs and activities.