Tourette Information Collection for Tracking, Recognition and Accelerated Clinical Education (TIC-TRACE) - In the United States, approximately 1.4 million individuals are navigating the complexities of persistent tic disorders (PTD), including Tourette Syndrome (TS). Understanding these conditions is paramount to enhance support mechanisms for those affected. While insights into the social and educational impacts of PTD/TS are available, the broader consequences, notably economic strains, suicidal ideation, healthcare transition difficulties, and the interplay with comorbidities, are under-documented. Given that TS carries an elevated risk for adverse health outcomes, the necessity to bridge the knowledge gap is urgent—particularly in light of barriers such as limited access to informed care and the negative influence of TS and its associated conditions. The Tourette Association of America (TAA) is poised to address these gaps through the Tourette Information Collection for Tracking, Recognition, and Accelerated Clinical Education (TIC-TRACE) initiative, which aims to harness the power of TAA’s Centers of Excellence (CoE) network to streamline data collection and surveillance. The establishment of TIC-TRACE in 2021 by TAA’s Research and Medical Department, in collaboration with a Medical Advisory Board, underscores a concerted effort to synthesize patient-reported outcomes and real-world data to enrich the understanding of TS, its management, and its psychosocial impacts. The scope of the TIC-TRACE initiative is complemented by the TAA Impact Survey, a biennial assessment that explores the effects of TS and Tic Disorders on individuals and families. As part of the surveillance strategy, the Impact Survey can provide critical insights into the community's experience, documenting factors such as economic burdens, mental health challenges including suicidality, and obstacles in healthcare transitions. The survey, already disseminated through the TAA's extensive network, enriches the planned dataset by capturing nuanced patient and caregiver perspectives. This amalgamation of clinical and survey data through TIC-TRACE and the Impact Survey equips the TAA with a multidimensional understanding of PTD/TS reinforcing its mission to deliver tailored services and educational programs that uphold the values of health equity and inclusivity. This ambitious project will unfold over the next few years, meticulously designed to contribute to the development of a robust, patient-centric data collection system. The initiative begins with the crafting and testing of the system , coupled with the creation of educational materials for staff and patients. After validating the proof of concept, the pilot phase will involve three (3) Centers of Excellence (CoEs) sites to iteratively refine the framework through diverse experiences and feedback. Subsequently, expansion will occur in increments of three additional sites at a time, prioritizing staff training and data collection. This process will culminate in insightful publications documenting early outcomes and variations across demographic segments. During full-scale implementation of TIC-TRACE, rigorous monitoring of training and recruitment fidelity will occur, offering critical insights into the scalability and effectiveness of the initiative. The outcomes and learned lessons will be detailed in subsequent publications, contributing to the literature on TS and shaping future approaches to care, treatment and policy. Through TIC-TRACE, TAA leverages its unique national reach to conduct surveillance among children, adolescents, and young adults with PTD/TS. The goal is to develop equitable services and educational programs that respond to the nuanced needs of this community. By documenting and examining data on comorbidities, suicidality, and healthcare transitions, and by linking clinical records with surveys and census data, TIC-TRACE promises to inform patient-centered care, advance health equity and address the underdiagnosis rate. The TIC-TRACE working group's unw
