The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does It Work?

Authors

• Wissam Deeb, University of Florida
• Peter J. Rossi, University of Florida
• Mauro Porta, Galeazzi Hospital, Milan, Italy
• Veerle Visser-Vandewalle, University of Cologne
• Domenico Servello, IRCCS Galeazzi, Milan Italy
• Peter Silburn, University of Queensland
• Terry Coyne, University of Queensland
• James F. Leckman, Yale University
• Thomas Foltynie, University College London Institute of Neurology
• Marwan Hariz, University College London Institute of Neurology
• Eileen M. Joyce, University College London Institute of Neurology
• Ludvic Zrinzo, University College London Institute of Neurology
• Zinovia Kefalopoulou, University College London Institute of Neurology
• Marie-Laure Welter, Hôpital Pitié-Salpêtrière, Paris, France
• Carine Karachi, Hôpital de la Pitié-Salpêtrière, Paris, France
• Luc Mallet, Geneva University Hospital
• Jean-Luc Houeto, Université de Poitiers
• Joohi Shahed-Jimenez, Baylor College of Medicine
• Fan-Gang Meng, Capital Medical University, Beijing, China
• Brian T. Klassen, Mayo Clinic College of Medicine
• Alan Y. Mogilner, New York University Medical Center
• Michael H. Pourfar, New York University Medical Center
• Jens Kuhn, University of Cologne
• L. Ackermans, Maastricht University Medical Center
• Takanobu Kaido, National Center of Neurology and Psychiatry, Kodaira, Japan
• Yasin Temel, Maastricht University
• Robert E. Gross, Emory University
• Harrison C. Walker, University of Alabama, Birmingham
• Andres M. Lozano, University of Toronto
• Suketu M. Khandhar, Movement Disorders Program, Sacramento, USA
• Benjamin L. Walter, Case Western Reserve University
• Ellen Walter, University Hospitals Case Medical Center
• Zoltan Mari, Johns Hopkins University
• Barbara K. Changizi, The Ohio State University Wexner Medical Center
• Elena Moro, Grenoble Alpes University
• Juan C. Baldermann, Universitätsklinikum Köln
• Daniel Huys, Universitätsklinikum Köln
• S. Elizabeth Zauber, Indiana University
• Lauren E. Schrock, University of Utah
• Jian-Guo Zhang, Capital Medical University, Beijing, China
• Wei Hu, University of Florida
• Kelly D. Foote, University of Florida
• Kyle Rizer, University of Florida
• Jonathan W. Mink, University of Rochester Medical Center
• Douglas W. Woods, Marquette University
• Aysegul Gunduz, University of Florida
• Michael S. Okun, University of Florida

Document Type

Article

Language

eng

Format of Original

10 p.

Publication Date

4-2016

Publisher

Frontiers Media S.A.

Source Publication

Frontiers in Neuroscience

Source ISSN

1662-453X

Original Item ID

DOI: 10.3389/fnins.2016.00170

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.

Comments

Published version. Frontiers in Neuroscience, Vol. 10 (April 2016). DOI. © 2016 Deeb, Rossi, Porta, et al. Used with permission.

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

Recommended Citation

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, Brian T.; Mogilner, Alan 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; and Okun, Michael S., "The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does It Work?" (2016). Psychology Faculty Research and Publications. 234.
https://epublications.marquette.edu/psych_fac/234