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The Tourette International Collaborative Genetics (TIC Genetics) Study includes scientists and clinicians specialized in Tourette Syndrome (TS) from more than 20 sites across the United States, Europe, and South Korea. The goal of this international study is to identify genetic (inherited) factors that play a role in causing TS and comorbid disorders such as Obsessive-Compulsive Disorder (OCD) and Attention-Deficit/Hyperactivity Disorder (ADHD). We are gathering information from approximately 2000 persons who either have TS or are related to someone with TS, in order to make this research possible.

TS is an inherited neurological disorder characterized by repeated involuntary movements (motor tics) and uncontrollable vocal sounds (vocal tics). While initially considered rare, the prevalence is now estimated to be 0.3-1% (between 3 in 1000 and 1 in 100 people) worldwide, predominantly children. Symptoms appear before the individual is 18 years old and can affect people of all ethnic groups; males are affected 3 to 4 times more often than females. Both as a result of potentially disabling symptoms and high rates of associated disorders, particularly with OCD and ADHD, TS represents a significant public health concern.

Despite decades of evidence supporting a significant genetic contribution, progress in identifying genetic risk alleles has been slow. This difficulty is thought to be, in part, a consequence of complex inheritance pattern and substantial genetic and phenotypic (symptom) heterogeneity. For this reason, TIC Genetics was established, in an effort to better understand the biological causes of TS and associated disorders.

TIC Genetics is funded by the National Institute of Mental Health (NIMH) in the USA. This grant is a direct result of work of the New Jersey Center for Tourette Syndrome (NJCTS) Sharing Repository, funded by grants from NJCTS Center of Excellence, which demonstrated the group’s ability to recruit subjects, collect and distribute DNA samples, and publish in high profile scientific journals including the New England Journal of Medicine.

The NIMH grant establishes the largest sharing cell and DNA repository for TS, located within the NIMH Center for Collaborative Genetic Research on Mental Disorders at Rutgers University, USA. The DNA and cell lines will become part of the NIMH Repository at Rutgers University as an international resource. The samples will be initially analyzed by TIC Genetics Study researchers and later made public by the NIMH to qualified scientists around the world. All study sites have obtained medical-ethical approval to conduct this study and all information is kept strictly confidential.