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Front Neurosci. 2016 Apr 25;10:170. doi: 10.3389/fnins.2016.00170. eCollection 2016.

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

Author information

1
Department of Neurology, University of Florida and Center for Movement Disorders and Neurorestoration Gainesville, FL, USA.
2
Tourette's Syndrome and Movement Disorders Center, Galeazzi Hospital Milan, Italy.
3
Department of Stereotactic and Functional Neurosurgery, University of Cologne Cologne, Germany.
4
Neusurgical Department, IRCCS Galeazzi Milan, Italy.
5
Asia-Pacific Centre for Neuromodulation, Queensland Brain InstituteBrisbane, Queensland, Australia; University of Queensland Centre for Clinical Research, The University of QueenslandBrisbane, Queensland, Australia.
6
University of Queensland Centre for Clinical Research, The University of QueenslandBrisbane, Queensland, Australia; BrizBrain&SpineBrisbane, QLD, Australia.
7
Departments of Psychiatry, Pediatrics and Psychology, Child Study Center, Yale University New Haven, CT, USA.
8
Sobell Department of Motor Neuroscience, University College London Institute of Neurology London, UK.
9
Assistance publique - Hôpitaux de Paris, Institut du Cerveau et de la Moelle Epiniere, Institut National de la Santé et de la Recherche Médicale 1127, Pitié-Salpêtrière Hospital, Sorbonne Universités, UPMC Univ Paris 06, Unité Mixte de Recherche 1127, Centre National de la Recherche Scientifique, Unité Mixte de Recherche 7225 Paris, France.
10
Institut National de la Santé et de la Recherche Médicale U 1127, Centre National de la Recherche Scientifique UMR 7225, Sorbonne Universités, UPMC Univ Paris 06 UMR S 1127, Institut du Cerveau et de la Moelle épinièreParis, France; Department of Neurosurgery, Assistance Publique - Hôpitaux de Paris, Hôpital de la Pitié-SalpêtrièreParis, France.
11
Institut National de la Santé et de la Recherche Médicale U 1127, Centre National de la Recherche Scientifique UMR 7225, Sorbonne Universités, UPMC Univ Paris 06 UMR S 1127, Institut du Cerveau et de la Moelle épinièreParis, France; Assistance publique - Hôpitaux de Paris, DHU Pe-PSY, Pôle de Psychiatrie et d'addictologie des Hôpitaux Universitaires H Mondor, Université Paris Est CréteilCréteil, France; Department of Mental Health and Psychiatry, Geneva University HospitalGeneva, Switzerland.
12
Service de Neurologie, Institut National de la Santé et de la Recherche Médicale-Centres d'Investigation Clinique 1402, Centre Hospitalier Universitaire de Grenoble de Poitiers, Université de Poitiers Poitiers, France.
13
Parkinson's Disease Center and Movement Disorders Clinic, Baylor College of Medicine Houston, TX, USA.
14
Beijing Neurosurgical Institute, Capital Medical University Beijing, China.
15
Department of Neurology, Mayo Clinic College of Medicine Rochester, MN, USA.
16
Department of Neurosurgery, Center for Neuromodulation, NYU Langone Medical Center New York, NY, USA.
17
Department of Psychiatry and Psychotherapy, University of Cologne Cologne, Germany.
18
Department of Neurosurgery, Maastricht University Medical Centre Maastricht, Netherlands.
19
Department of Neurosurgery, National Center Hospital, National Center of Neurology and Psychiatry Kodaira, Japan.
20
Department of Neurosurgery, Maastricht University Medical CenterMaastricht, Netherlands; Faculty of Health, Medicine and Life Sciences, School for Mental Health and Neuroscience, Maastricht UniversityMaastricht, Netherlands.
21
Department of Neurosurgery, Emory University Atlanta, GA, USA.
22
Department of Neurology, Department of Biomedical Engineering, University of Alabama at Birmingham Birmingham, AL, USA.
23
Division of Neurosurgery, University of Toronto Toronto, Canada.
24
Department of Neurology, The Permanente Medical Group (Tidewater Physicians Multispecialty Group), Movement Disorders Program Sacramento, CA, USA.
25
University Hospitals, Case Western Reserve University School of Medicine Cleveland, OH, USA.
26
Department of Neurology, University Hospitals Case Medical Center, Neurological Institute Cleveland, OH, USA.
27
Parkinson's & Movement Disorder Center/Division, Johns Hopkins University, School of Medicine Baltimore, MD, USA.
28
Department of Neurology, The Ohio State University Wexner Medical Center Columbus, OH, USA.
29
Division of Neurology, Centre Hospitalier Universitaire de Grenoble Grenoble, Grenoble Alpes University Grenoble, France.
30
Department of Psychiatry and Psychotherapy, Universitätsklinikum Köln Köln, Germany.
31
Department of Neurology, Indiana University School of Medicine Indianapolis, IN, USA.
32
Department of Neurology, University of Utah Salt Lake City, UT, USA.
33
Department of Functional Neurosurgery, Beijing Tiantan Hospital, Capital Medical University Beijing, China.
34
Department of Neurology, University of Florida and Center for Movement Disorders and NeurorestorationGainesville, FL, USA; Department of Neurological Surgery, University of FloridaGainesville, FL, USA.
35
Department of Neurology, University of Rochester Medical Center Rochester, NY, USA.
36
Department of Psychology, Marquette University Milwaukee, WI, USA.
37
Department of Neurology, University of Florida and Center for Movement Disorders and NeurorestorationGainesville, FL, USA; J. Crayton Pruitt Family Department of Biomedical Engineering, University of FloridaGainesville, FL, USA.

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.

KEYWORDS:

Tourette syndrome; database; deep brain stimulation; registry; regulatory agencies; tics

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