Frontiers in Neuroscience (Apr 2016)

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

  • Wissam eDeeb,
  • Peter J. Rossi,
  • Mauro ePorta,
  • Veerle eVisser-Vandewalle,
  • Domenico eServello,
  • Peter eSilburn,
  • Peter eSilburn,
  • Terry eCoyne,
  • Terry eCoyne,
  • James F. Leckman,
  • Thomas eFoltynie,
  • Marwan eHariz,
  • Eileen Maria Joyce,
  • Ludvic eZrinzo,
  • Zinovia eKefalopoulou,
  • Marie-Laure eWelter,
  • Carine eKarachi,
  • Carine eKarachi,
  • Luc eMallet,
  • Luc eMallet,
  • Luc eMallet,
  • JL eHoueto,
  • Joohi eJimenez-Shahed,
  • Fan-Geng eMeng,
  • Bryan T. Klassen,
  • Alon Y. Mogilner,
  • Michael H. Pourfar,
  • Jens eKuhn,
  • L. eAckermans,
  • Takanobu eKaido,
  • Yasin eTemel,
  • Yasin eTemel,
  • Robert E Gross,
  • Harrison C. Walker,
  • Andres M. Lozano,
  • Suketu M. Khandhar,
  • Benjamin L. Walter,
  • Ellen eWalter,
  • Zoltan eMari,
  • Barbara Kelly Changizi,
  • Elena eMoro,
  • Juan Carlos eBaldermann,
  • Daniel eHuys,
  • S. Elizabeth eZauber,
  • Lauren E. Schrock,
  • Jian-guo eZhang,
  • Wei eHu,
  • Kelly Douglas Foote,
  • Kyle eRizer,
  • Jonathan W. Mink,
  • Douglas W. Woods,
  • Aysegul eGunduz,
  • Aysegul eGunduz,
  • Michael S. Okun

DOI
https://doi.org/10.3389/fnins.2016.00170
Journal volume & issue
Vol. 10

Abstract

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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 implanted 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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