AUTHOR=Deeb Wissam , Rossi Peter J. , Porta Mauro , Visser-Vandewalle Veerle , Servello Domenico , Silburn Peter , Coyne Terry , Leckman James F. , Foltynie Thomas , Hariz Marwan , Joyce Eileen M. , Zrinzo Ludvic , Kefalopoulou Zinovia , Welter Marie-Laure , Karachi Carine , Mallet Luc , Houeto Jean-Luc , Shahed-Jimenez Joohi , Meng Fan-Gang , Klassen Bryan T. , Mogilner Alon Y. , Pourfar Michael H. , Kuhn Jens , Ackermans L. , Kaido Takanobu , Temel Yasin , Gross Robert E. , Walker Harrison C. , Lozano Andres M. , Khandhar Suketu M. , Walter Benjamin L. , Walter Ellen , Mari Zoltan , Changizi Barbara K. , Moro Elena , Baldermann Juan C. , Huys Daniel , Zauber S. Elizabeth , Schrock Lauren E. , Zhang Jian-Guo , Hu Wei , Foote Kelly D. , Rizer Kyle , Mink Jonathan W. , Woods Douglas W. , Gunduz Aysegul , Okun Michael S. TITLE=The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does It Work? JOURNAL=Frontiers in Neuroscience VOLUME=10 YEAR=2016 URL=https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2016.00170 DOI=10.3389/fnins.2016.00170 ISSN=1662-453X ABSTRACT=

Tourette Syndrome (TS) is a neuropsychiatric disease characterized by a combination of motor and vocal tics. Deep brain stimulation (DBS), already widely utilized for Parkinson's disease and other movement disorders, is an emerging therapy for select and severe cases of TS that are resistant to medication and behavioral therapy. Over the last two decades, DBS has been used experimentally to manage severe TS cases. The results of case reports and small case series have been variable but in general positive. The reported interventions have, however, been variable, and there remain non-standardized selection criteria, various brain targets, differences in hardware, as well as variability in the programming parameters utilized. DBS centers perform only a handful of TS DBS cases each year, making large-scale outcomes difficult to study and to interpret. These limitations, coupled with the variable effect of surgery, and the overall small numbers of TS patients with DBS worldwide, have delayed regulatory agency approval (e.g., FDA and equivalent agencies around the world). The Tourette Association of America, in response to the worldwide need for a more organized and collaborative effort, launched an international TS DBS registry and database. The main goal of the project has been to share data, uncover best practices, improve outcomes, and to provide critical information to regulatory agencies. The international registry and database has improved the communication and collaboration among TS DBS centers worldwide. In this paper we will review some of the key operation details for the international TS DBS database and registry.