In 2007, NJ Center for Tourette Syndrome and Associated Disorders (NJCTS), in partnership with Rutgers University, established the NJCTS Cell & DNA Sharing Repository. Thanks to the participation of NJCTS families, the repository became the world’s first sharing resource of clinical data and genetic samples from which all qualified scientists could draw for their research. Prior to this, independent scientists had no access to large collections of DNA and clinical data to study TS.

Just four years later, in 2011, the National Institute of Mental Health (NIMH) recognized the NJCTS Cell & DNA Sharing Repository as an important federal research asset and funded its expansion. This led the Rutgers/NJCTS partnership to establish the Tourette International Collaborative Genetics (TIC Genetics) study, that includes 25 sites across the United States, Europe, and South Korea, in turn, making the Rutgers facility the world’s largest sharing cell and DNA repository for Tourette Syndrome.

The goal of the partnership between NJCTS and TIC Genetics is to identify genetic factors that play a role in causing TS and comorbid disorders such as Obsessive-Compulsive Disorder (OCD) and Attention-Deficit/Hyperactivity Disorder (ADHD). With knowledge about the causes of TS, we hope to identify better treatments and a cure for TS.

TIC Genetics clinical researchers worldwide with experience in TS utilize uniform diagnostic instruments and procedures to collect subject samples and clinical data, which are then sent to Rutgers to be processed, stored, and shared. Individuals with a chronic tic disorder, including TS, and their family members, both affected and unaffected, are invited to participate in the TIC Genetics study.

In May 2017, the TIC Genetics study collaborators’ breakthrough research was published in the medical journal Neuron. Their findings included the identification of one damaged, or mutant, “high confidence” TS risk gene as well as three other genes that they believe are likely TS risk genes when mutated. They now estimate that there are approximately 400 genes that when mutated could pose a risk for Tourette syndrome.

In their latest published article in the journal Cell Reports on September 25, 2018, TIC Genetics and other groups identified a new high-confidence Tourette risk gene as well as two probable risk genes. In this new publication, they report two significant findings: TS is sometimes caused by new and rare damaging mutations in specific genes or through structural mutations, known as copy number variants (CNVs), spanning multiple genes. In addition to “likely” TS risk genes, they found another “high confidence” risk gene called CELSR3.

These two significant findings provide a framework for future research into the causes and treatment of Tourette Syndrome.

Because of these continuing advancements, the NIMH recently awarded NJCTS partner, TIC Genetics, a grant of more than $10 million to continue this research for an additional five years. NJCTS and TIC Genetics are looking to recruit many more families to better understand how these and other damaging mutations lead to Tourette disorder.

All samples are initially analyzed by TIC Genetics Study researchers and later made available by NIMH to qualified scientists around the world. TIC Genetics is especially looking for families in which only one person is affected with TS or another chronic tic disorder and both parents are available to participate.

To inquire about becoming a part of these breakthrough efforts to advance TS research by NJCTS and the TIC Genetics team, please email familystudy@biology.rutgers.edu.

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