1st World Congress on Tourette Syndrome and Tic Disorders

This volume holds abstracts from the 1st World Congress on Tourette Syndrome and Tic Disorders which took place on June 24-26, 2015, in London UK, hosted by the Tourette Association of America (TAA), the European Society for the Study of Tourette Syndrome (ESSTS), Tourettes Action-UK (TA) and other global partners. This event was the fi rst-ever global summit for Tourette Syndrome, bringing together world experts with the common goals of 1) sharing state of the art knowledge, 2) advancing our understanding of the pathophysiology of Tourette Syndrome, 3) working towards improved management of Tourette Syndrome, and 4) strategizing on increasing advocacy for and on behalf of people living with Tourette Syndrome and related disorders. Tourette Syndrome (TS) is a common, albeit often misdiagnosed disorder, with a reported prevalence of 0.4-1%. It is part of a spectrum of childhood-onset neurodevelopmental conditions referred to as Tic Disorders. The core features of these conditions, which affect both children and adults, are motor and vocal tics: sudden, uncontrollable repetitive movements and/or sounds (e.g. head bobbing, arm jerking, shoulder shrugging and grunting). Related features, such as Obsessive Compulsive Disorder (OCD), Attention Defi cit Hyperactivity Disorder (ADHD) and learning diffi culties, are very common in individuals with TS and Tic Disorders and often cause more impairment than the do the tics themselves. Symptoms in Tic Disorders can range from mild to severe and, in some cases can be debilitating, markedly reducing quality of life. The etiology of the disorder remains elusive and is clearly complex, with multiple genes interacting with environmental factors to lead to the onset of symptoms. At the same time, while some treatments are available for people with TS and other Tic Disorders, approaches to care are inconsistent around the world, medications are often ineffective and there is no cure. Over the past few years, we have witnessed exciting developments not just in the understanding of the neurobiology and treatment of TS, but also in international collaborations for TS research and advocacy, such as the international DBS registry and the European Multicentre Tics in Children Study (EMTICS). Vibrant multi-national research networks for TS have been established and national patient groups have started joining forces to support the mission of outreach and education for TS around the world. These collaborative efforts inspired the 1st World Congress on Tourette Syndrome and Tic Disorders. More than 430 research scientists, physicians, neurosurgeons, psychologists, social workers and other experts from 38 countries and six continents gathered in London and discussed on all facets of TS research, including drug development, genetics, comorbid conditions, surgical therapies and behavioral treatments for children and adults. This unprecedented global assembly marked the fi rst time a collective forum of such size and signifi cance has ever been convened to explore means of improving the lives of people affected by these neurodevelopmental conditions. Leading experts in the fi eld laid the foundation for a new global workforce focused on TS and Tic Disorders research, presenting 185 scientifi c abstracts and 161 posters with important discoveries and developments that have the potential to change our understanding and ability to treat these conditions. We are grateful to the TS global community of researchers for their enthusiastic response and we are certain that this was the fi rst of many such gatherings. We share with you the aim of improving the lives of families and individuals affected by TS through research, clinical care, and advocacy.