Assessment of developmental milestone attainment in electronic health record-derived tic disorder patients

About This Grant

PROJECT SUMMARY Motor and vocal tics are defined by repetitive, uncontrollable movements or sounds and are a common feature of childhood developmental disorders. Although tics impact the lives of 1-2% of children and increase the risk for disabling neurological and psychiatric conditions later in life, tic disorder research has been hindered because of the small number of patients enrolled in research studies. To improve the lives of tic disorder patients and address this burden to public health, it is critical that we expand our research to larger populations. This proposal addresses this limitation by introducing the use of existing electronic health record data as a cost-effective way to analyze detailed patient information across the lifespan of individuals with tic disorders. We have assembled a research team that is well suited to perform these studies, including researchers and specialized clinicians with extensive experience in analyzing electronic health record data and expertise in the diagnosis and treatment of complex neurodevelopmental conditions, including tic disorders. First, we will design an algorithm to identify individuals with evidence of a tic disorder diagnosis by systematically searching for specific patient characteristics across the medical records of 3.8 million patients. We will then evaluate the performance of this algorithm using clinical expertise and a validated set of tic disorder patient records. Next, we will use information from medical records to examine whether delays in early childhood development are observed in tic disorder patients. Pediatric milestone data is collected on all children at well-care visits from birth to early childhood and includes direct reporting from parents and physicians assessing the child's ability to achieve standardized motor, social, and language skills (e.g. sitting, crawling, walking, smiling, pointing, name-recognition). This dataset provides a rare opportunity to examine whether individuals with tic disorders show developmental delays that predate the onset of tic symptoms. Lastly, we will look at whether the timing of developmental milestone attainment is associated with specific health outcomes in tic disorder patients. The deliverables from this study include cu ration of a large dataset of clinically validated tic disorder patients that will serve as a valuable resource for future investigations. Additionally, this study will provide the first systematic evaluation of developmental milestone attainment in tic disorder patients at this scale. By harnessing the power of large-scale electronic health record data, we can evaluate the clinical features underlying tic disorders across the lifespan, ultimately leading to better-informed personalized care and decreased burden on patients and their families.