The international deep brain stimulation registry and database for Gilles de la Tourette syndrome: how does it work?

Deeb, Wissam, Rossi, Peter J., Porta, Mauro, Visser-Vandewalle, Veerle, Servello, Domenica, 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, Suteku 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. (2016) The international deep brain stimulation registry and database for Gilles de la Tourette syndrome: how does it work?. Frontiers in Neuroscience, 10 170: 1-10. doi:10.3389/fnins.2016.00170


Author Deeb, Wissam
Rossi, Peter J.
Porta, Mauro
Visser-Vandewalle, Veerle
Servello, Domenica
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, Suteku 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 name Frontiers in Neuroscience   Check publisher's open access policy
ISSN 1662-453X
Publication date 2016-04-25
Year available 2016
Sub-type Article (original research)
DOI 10.3389/fnins.2016.00170
Open Access Status DOI
Volume 10
Issue 170
Start page 1
End page 10
Total pages 10
Place of publication Lausanne, Switzerland
Publisher Frontiers Research Foundation
Collection year 2017
Language eng
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.
Keyword Tourette syndrome
Deep brain stimulation
Database
Registry
Tics
Regulatory agencies
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: UQ Centre for Clinical Research Publications
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