Documenting outcomes associated with Persistent Tic Disorders (including Tourette Syndrome) in Children, Adolescents, and Young Adults through Surveillance

Eligible applicants should have the infrastructure and capacity to identify, collect, and disseminate information on outcomes associated with persistent tic disorders (PTD) including Tourette syndrome (TS) among children, adolescents, and young adults. Specifically, this entails: 1) access to a population of children, adolescents, and young adults with PTD/TS; 2) expertise in identification of PTD/TS; and 3) capacity to collect and analyze survey data and summarize and disseminate findings.CDC proposes to allocate funds to implement a Notice of Funding Opportunity (NOFO), Surveillance of Public Health Burden of Persistent Tic Disorders including Tourette Syndrome in Children, Adolescents, and Young Adults. The purpose of the NOFO is to conduct surveillance of persistent tic disorders (PTD) including Tourette syndrome (TS) among children, adolescents, and young adults to: • Document the public health burden (i.e., outcomes) of these disorders • Generate data that can be used to inform education and outreach activities to improve the health and well-being of individuals with tic disorders and their families. Proposed activities for this NOFO include the following: • Collaborate with CDC and other NOFO recipients to identify measures for priority areas of burden including cost, healthcare transition, suicidality, and co-occurring disorders. • Collaborate with CDC and other recipients to determine a standard survey and surveillance protocol across sites and shared data approach. • Collect and share de-identified data with CDC. • Collaborate with CDC and other NOFO recipients to analyze, summarize, and disseminate multi-site findings.