New Jersey To Be Home For World’s First Shared Genetics Resource for Tourette Syndrome Research

Renowned Geneticist Leads Program to Benefit TS Researchers Worldwide


The bad news: Tourette Syndrome (TS) is a misunderstood and often misdiagnosed condition—and in children it is often the cause of years of academic and social struggles.


The worse news is that the disorder is much more widespread than people realize—affecting as many as one in 200 children or 26,000 kids in New Jersey alone! The good news: Some substantial research developments to better understand TS and to help those with TS are taking place right here in our state.


The New Jersey Center for Tourette Syndrome (NJCTS), working in conjunction with the Tourette Syndrome Association of New Jersey, Inc. (TSANJ), has announced the formation of the a new Tourette Syndrome Cell and DNA Sharing Program.


Dr. Jay Tischfield, Chair of the Rutgers Department of Genetics and Director of National Institute of Mental Health Center for Collaborative Genetics Research on Mental Disorders, and Scientific Director of the Rutgers Cell and DNA Repository, will be leading the collection and storage of clinical data, cell lines and DNA samples from people with TS and their families. These samples will be shared worldwide with qualified researchers whose goal is the identification of inherited factors that may lead to developing TS and its associated conditions.


This program is especially significant and exciting, as a major breakthrough has recently occurred in TS research. Dr. Mathew State, a Yale University researcher, has identified a specific gene defect in a small percentage people with TS. “This opens the avenue for more exacting research into TS causes and cures,” claims Dr. State. “TS research was far behind prior to the identification of the gene. And now, thanks to the creation of this sharing program, we’ll be able to move ahead much more quickly.”


The identification of specific genes has lead to breakthroughs in many other areas of medicine including autism and alcoholism.


Some New Jersey families have expressed an interest in participating in the study by providing DNA samples. The program adheres to a policy of strict confidentiality for all participants.


“The sharing of TS DNA is sorely needed. One of the problems faced by the Tourette Syndrome research community has been the failure to establish a direct and effective mechanism for distributing clinical data and biological samples to the broadest possible base of researchers,” says Dr. Tischfield. “This situation has produced genetics studies that often contain sub-optimal numbers of participants.”


Dr. Tischfield is the recipient of active US National Institutes’ of Health awards in excess of $70 million to further collaborative genetics studies. He is also Director of the Human Genetics Institute of New Jersey and Co-Director of the NIAAA (alcoholism) and NIDA (drug abuse) Centers for Genetic Studies.


The Rutgers University Cell and DNA Repository is the largest university-based cell and DNA repository in the world, collecting over 100,000 subject samples to distribute to researchers worldwide. This model program has been successful in furthering research in autism, schizophrenia, bipolar disorder, depression, alcoholism and opiate addition.


“Ultimately, we hope the utility and value of this approach might become evident to the larger community of TS advocates, clinicians and researchers,” observes Faith Rice, Director of TSANJ. “Sharing TS DNA could become an internationally supported program serving the needs of existing researchers and attracting new researchers to TS.”


The establishment of this TS DNA repository within New Jersey as part of the NJ Center for Tourette Syndrome would have beneficial effects beyond TS families. It would allow New Jersey researchers to contribute to and access this resource–propelling New Jersey into a position of national prominence in TS research. Key elements of the pharmaceutical industry within New Jersey are also interested in this research in order to develop new medicines for TS, thus increasing industry commitment to New Jersey.


“The TS DNA sharing would grow the knowledge-based economy of the state while improving the health and economic welfare if its citizens,” adds Dr. Tischfield. “These are exciting times. With the recent identification of a TS gene defect plus the first TS DNA bank, experts worldwide are poised for huge advances in the field of TS research–advances never before imaginable.”


Founded in 1994, TSANJ is a non-profit organization whose mission is to support the needs of New Jersey families and individuals with Tourette Syndrome. For more information about TSANJ, call the hotline at 732-972-4459, visit their web site at www.tsanj.org, or call Faith Rice, Director, at (908) 575-7350.