The international deep brain stimulation registry and database for gilles de la tourette syndrome: How does it work?

Wissam Deeb, Peter J. Rossi, Mauro Porta, Veerle Visser-Vandewalle, Domenico Servello, Peter Silburn, Terry Coyne, James F. Leckman, Thomas Foltynie, Marwan Hariz, Eileen M. Joyce, Ludvic Zrinzo, Zinovia Kefalopoulou, Marie Laure Welter, Carine Karachi, Luc Mallet, Jean Luc Houeto, Joohi Shahed-Jimenez, Fan Gang Meng, Bryan T. KlassenAlon Y. Mogilner, Michael H. Pourfar, Jens Kuhn, L. Ackermans, Takanobu Kaido, Yasin Temel, Robert E. Gross, Harrison C. Walker, Andres M. Lozano, Suketu M. Khandhar, Benjamin L. Walter, Ellen Walter, Zoltan Mari, Barbara K. Changizi, Elena Moro, Juan C. Baldermann, Daniel Huys, Elizabeth E. Zauber, Lauren E. Schrock, Jian Guo Zhang, Wei Hu, Kelly D. Foote, Kyle Rizer, Jonathan W. Mink, Douglas W. Woods, Aysegul Gunduz, Michael S. Okun

Research output: Contribution to journalArticle

20 Citations (Scopus)

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.

Original languageEnglish
Article number170
JournalFrontiers in Neuroscience
Volume10
Issue numberAPR
DOIs
Publication statusPublished - Apr 25 2016

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Tourette Syndrome
Deep Brain Stimulation
Registries
Databases
Tics
Movement Disorders
Practice Guidelines
Patient Selection
Parkinson Disease
Communication
Brain
Therapeutics

Keywords

  • Database
  • Deep brain stimulation
  • Registry
  • Regulatory agencies
  • Tics
  • Tourette syndrome

ASJC Scopus subject areas

  • Neuroscience(all)

Cite this

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, 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, Elizabeth E.; Schrock, Lauren E.; Zhang, Jian Guo; Hu, Wei; Foote, Kelly D.; Rizer, Kyle; Mink, Jonathan W.; Woods, Douglas W.; Gunduz, Aysegul; Okun, Michael S.

In: Frontiers in Neuroscience, Vol. 10, No. APR, 170, 25.04.2016.

Research output: Contribution to journalArticle

Deeb, W, Rossi, PJ, Porta, M, Visser-Vandewalle, V, Servello, D, Silburn, P, Coyne, T, Leckman, JF, Foltynie, T, Hariz, M, Joyce, EM, Zrinzo, L, Kefalopoulou, Z, Welter, ML, Karachi, C, Mallet, L, Houeto, JL, Shahed-Jimenez, J, Meng, FG, Klassen, BT, Mogilner, AY, Pourfar, MH, Kuhn, J, Ackermans, L, Kaido, T, Temel, Y, Gross, RE, Walker, HC, Lozano, AM, Khandhar, SM, Walter, BL, Walter, E, Mari, Z, Changizi, BK, Moro, E, Baldermann, JC, Huys, D, Zauber, EE, Schrock, LE, Zhang, JG, Hu, W, Foote, KD, Rizer, K, Mink, JW, Woods, DW, Gunduz, A & Okun, MS 2016, 'The international deep brain stimulation registry and database for gilles de la tourette syndrome: How does it work?', Frontiers in Neuroscience, vol. 10, no. APR, 170. https://doi.org/10.3389/fnins.2016.00170
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, Elizabeth E. ; Schrock, Lauren E. ; Zhang, Jian Guo ; Hu, Wei ; Foote, Kelly D. ; Rizer, Kyle ; Mink, Jonathan W. ; Woods, Douglas W. ; Gunduz, Aysegul ; Okun, Michael S. / The international deep brain stimulation registry and database for gilles de la tourette syndrome : How does it work?. In: Frontiers in Neuroscience. 2016 ; Vol. 10, No. APR.
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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.",
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AU - Visser-Vandewalle, Veerle

AU - Servello, Domenico

AU - Silburn, Peter

AU - Coyne, Terry

AU - Leckman, James F.

AU - Foltynie, Thomas

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AU - Joyce, Eileen M.

AU - Zrinzo, Ludvic

AU - Kefalopoulou, Zinovia

AU - Welter, Marie Laure

AU - Karachi, Carine

AU - Mallet, Luc

AU - Houeto, Jean Luc

AU - Shahed-Jimenez, Joohi

AU - Meng, Fan Gang

AU - Klassen, Bryan T.

AU - Mogilner, Alon Y.

AU - Pourfar, Michael H.

AU - Kuhn, Jens

AU - Ackermans, L.

AU - Kaido, Takanobu

AU - Temel, Yasin

AU - Gross, Robert E.

AU - Walker, Harrison C.

AU - Lozano, Andres M.

AU - Khandhar, Suketu M.

AU - Walter, Benjamin L.

AU - Walter, Ellen

AU - Mari, Zoltan

AU - Changizi, Barbara K.

AU - Moro, Elena

AU - Baldermann, Juan C.

AU - Huys, Daniel

AU - Zauber, Elizabeth E.

AU - Schrock, Lauren E.

AU - Zhang, Jian Guo

AU - Hu, Wei

AU - Foote, Kelly D.

AU - Rizer, Kyle

AU - Mink, Jonathan W.

AU - Woods, Douglas W.

AU - Gunduz, Aysegul

AU - Okun, Michael S.

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