Tourette Syndrome (TS) is a neurological disorder characterized by chronic motor and phonic tics that make their appearance before 18 years of age [1]. Prevalence ranges from 1–3% and the disorder is found across many ethnic groups around the world [2]. Males are affected 3 to 4 times more often than females, and the condition is less often diagnosed in adults than in children, most likely because tics often spontaneously diminish or disappear by later adolescence [3]. Individuals with TS and their family members frequently exhibit comorbid difficulties such as obsessions and compulsions (including full-blown OCD), which may reflect alternative manifestations of the genetic factors; ADHD; uneven neuropsychological profile (e.g., visual-motor integration and fine-motor skill deficits); and vulnerability to anxiety and depression are also common [4–8].

Family, segregation and twin studies consistently indicate that genetic factors play a significant role in the etiology of TS [for reviews, see [9–11]]. Although there have been some initial positive findings [12–15], identification of replicable susceptibility alleles has thus far remained elusive. Possible explanations for non-replication include phenotypic and locus heterogeneity, gene-environmental interaction, population stratification, and differences in phenotype definition or model specification [9, 11, 16–19]. There is a need for large replication samples. Open exchange of clinical data and biomaterials can foster new and innovative research that may overcome these putative impediments and may encourage more investigators to work on Tourette Syndrome [20–22]. To facilitate the clinical data and DNA samples from well-characterized Tourette Syndrome probands and their families reaching the widest possible research community, we established a sharing resource of clinical and genetic data, the New Jersey Center for Tourette Syndrome Sharing Repository (NJCTS Sharing Repository). The purpose of the repository is to identify genetic factors that play a causal role in Tourette Syndrome (TS), Chronic Motor or Vocal Tic Disorder, and associated disorders such as Chronic Tics (CT), Obsessive-Compulsive disorder (OCD) and Attention Deficit Hyperactivity Disorder (ADHD) by providing clinical data, DNA, and/or lymphoblastoid cell lines to qualified researchers from throughout the world. This article describes repository's data collection procedures and clinical assessments as well as how researchers can access the data.

The NJCTS Sharing Repository contains clinical data, DNA, and lymphoblastoid cell lines on singleton probands, trios (probands plus both parents), and larger pedigrees. All subjects, both affected and unaffected, are evaluated by an experienced psychiatrist specializing in Tourette Syndrome. Data collection is ongoing and submitted samples are available for distribution as soon as they have been processed and the accompanying clinical/demographic data entered (i.e., no embargo period). For a summary of the current data collection, clinical assessment forms, instructions for accessing the data, see the NJCTS repository website at: http://tourette-repository.org/.

The NJCTS Sharing Repository provides a unique resource for disseminating clinical data, DNA, and lymphoblastoid cell lines to qualified researchers interested in conducting genetic analyses on Tourette Syndrome and associated conditions. The goal is to provide data access to the widest possible research community to hasten the identification of causal genetic factors and facilitate better understanding and treatment of this often impairing disorder.

NJCTS Sharing Repository is devoted to the collection and expedited distribution of biomaterials and clinical data for the genetic analysis of Tourette Syndrome and related disorders. Therefore, there is no embargo period between sample submission and availability for distribution. Anonymous data on family structure, age, sex, clinical status, and diagnosis ("clinical data"), DNA samples, blood plasma, and cell line cultures ("biomaterials") are distributed to qualified researchers at recognized biomedical research facilities. Researchers may gain access to clinical data, genetic analysis data, and biomaterials after receiving approval based on the qualifications of the investigators in conducting genetic research on complex disorders. Once approval is given, clinical data and biomaterials are sent after payment of a modest access fee. As of 4/1/08, we have distributed clinical data and DNA to three independent international research groups. For more instructions on how to obtain access to data, see the NJCTS repository website at: http://tourette-repository.org/.