Deeb, Wissam, Rossi, Peter J., Porta, Mauro, Visser-Vandewalle, Veerle, Servello, Domenico ORCID: 0000-0002-0123-1615, 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 ORCID: 0000-0001-8061-1167, 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 ORCID: 0000-0001-7925-0747 and Okun, Michael S. (2016). The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does It Work? Front. Neurosci., 10. LAUSANNE: FRONTIERS MEDIA SA. ISSN 1662-453X

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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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Deeb, WissamUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rossi, Peter J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Porta, MauroUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Visser-Vandewalle, VeerleUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Servello, DomenicoUNSPECIFIEDorcid.org/0000-0002-0123-1615UNSPECIFIED
Silburn, PeterUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Coyne, TerryUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Leckman, James F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Foltynie, ThomasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hariz, MarwanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Joyce, Eileen M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Zrinzo, LudvicUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kefalopoulou, ZinoviaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Welter, Marie-LaureUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Karachi, CarineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mallet, LucUNSPECIFIEDorcid.org/0000-0001-8061-1167UNSPECIFIED
Houeto, Jean-LucUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Shahed-Jimenez, JoohiUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Meng, Fan-GangUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Klassen, Bryan T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mogilner, Alon Y.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pourfar, Michael H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kuhn, JensUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ackermans, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kaido, TakanobuUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Temel, YasinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gross, Robert E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Walker, Harrison C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lozano, Andres M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Khandhar, Suketu M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Walter, Benjamin L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Walter, EllenUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mari, ZoltanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Changizi, Barbara K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Moro, ElenaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Baldermann, Juan C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Huys, DanielUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Zauber, S. ElizabethUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schrock, Lauren E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Zhang, Jian-GuoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hu, WeiUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Foote, Kelly D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rizer, KyleUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mink, Jonathan W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Woods, Douglas W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gunduz, AysegulUNSPECIFIEDorcid.org/0000-0001-7925-0747UNSPECIFIED
Okun, Michael S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-278346
DOI: 10.3389/fnins.2016.00170
Journal or Publication Title: Front. Neurosci.
Volume: 10
Date: 2016
Publisher: FRONTIERS MEDIA SA
Place of Publication: LAUSANNE
ISSN: 1662-453X
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
DOUBLE-BLIND; THALAMIC-STIMULATION; TRIAL; PATIENTMultiple languages
NeurosciencesMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/27834

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