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

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机构: [1]Univ Florida, Dept Neurol, Gainesville, FL USA; [2]Ctr Movement Disorders & Neurorestorat, Gainesville, FL USA; [3]Galeazzi Hosp, Tourettes Syndrome & Movement Disorders Ctr, Milan, Italy; [4]Univ Cologne, Dept Stereotact & Funct Neurosurg, D-50931 Cologne, Germany; [5]IRCCS Galeazzi, Dept Neurosurg, Milan, Italy; [6]Asia Pacific Ctr Neuromodulat, Queensland Brain Inst, Brisbane, Qld, Australia; [7]Univ Queensland, Univ Queensland Ctr Clin Res, Brisbane, Qld, Australia; [8]BrizBrain&Spine, Brisbane, Qld, Australia; [9]Yale Univ, Dept Psychiat, Child Study Ctr, New Haven, CT USA; [10]Yale Univ, Dept Pediat, Child Study Ctr, New Haven, CT USA; [11]Yale Univ, Dept Psychol, Child Study Ctr, New Haven, CT USA; [12]UCL, Sobell Dept Motor Neurosci, Inst Neurol, London, England; [13]Univ Paris 06, Sorbonne Univ,UMR 7225, Pitie Salpetriere Hosp,CNRS,Inst Natl Sante & Rec, AP HP,Inst Cerveau & Moelle Epiniere,UMR 1127, Paris, France; [14]Univ Paris 06, Sorbonne Univ, Inst Natl Sante & Rech Med U 1127, Inst Cerveau & Moelle Epiniere,CNRS UMR 7225, Paris, France; [15]Hop La Pitie Salpetriere, AP HP, Dept Neurosurg, Paris, France; [16]Univ Paris Est Creteil, Hop Univ H Mondor, AP HP, DHU Pe PSY,Pole Psychiat & Addictol, Creteil, France; [17]Univ Hosp Geneva, Dept Mental Hlth & Psychiat, Geneva, Switzerland; [18]Univ Poitiers, Serv Neurol, Inst Natl Sante & Rech Med, Ctr Invest Clin 1402,Ctr Hosp Univ Grenoble Poiti, Poitiers, France; [19]Baylor Coll Med, Parkinsons Dis Ctr, Houston, TX 77030 USA; [20]Baylor Coll Med, Movement Disorder Clin, Houston, TX 77030 USA; [21]Capital Med Univ, Beijing Neurosurg Inst, Beijing, Peoples R China; [22]Mayo Clin, Dept Neurol, Coll Med, Rochester, MN USA; [23]NYU, Dept Neurosurg, Ctr Neuromodulat, Longone Med Ctr, 550 1St Ave, New York, NY 10016 USA; [24]Univ Cologne, Dept Psychiat & Psychotherapy, D-50931 Cologne, Germany; [25]Maastricht Univ, Dept Neurosurg, Med Ctr, NL-6200 MD Maastricht, Netherlands; [26]Natl Ctr Hosp, Natl Ctr Neurol & Psychiat, Dept Neurosurg, Kodaira, Tokyo, Japan; [27]Maastricht Univ, Fac Hlth Med & Life Sci, Sch Mental Hlth & Neurosci, NL-6200 MD Maastricht, Netherlands; [28]Emory Univ, Dept Neurosurg, Atlanta, GA 30322 USA; [29]Univ Alabama Birmingham, Dept Biomed Engn, Dept Neurol, Birmingham, AL 35294 USA; [30]Univ Toronto, Div Neurosurg, Toronto, ON, Canada; [31]Permanente Med Grp Inc, Dept Neurol, Movement Disorders Program, Sacramento, CA USA; [32]Case Western Reserve Univ, Sch Med, Univ Hosp, Cleveland, OH USA; [33]Univ Hosp Case Med Ctr, Dept Neurol, Neurol Inst, Cleveland, OH USA; [34]Johns Hopkins Univ, Sch Med, Parkinsons & Movement Disorder Ctr Div, Baltimore, MD USA; [35]Ohio State Univ, Dept Neurol, Wexner Med Ctr, Columbus, OH 43210 USA; [36]Grenoble Alpes Univ, Div Neurol, CHU Grenoble, Grenoble, France; [37]Univ Klinikum Koln, Dept Psychiat & Psychotherapy, Cologne, Germany; [38]Indiana Univ, Sch Med, Dept Neurol, Indianapolis, IN 46202 USA; [39]Univ Utah, Dept Neurol, Salt Lake City, UT USA; [40]Capital Med Univ, Beijing Tiantan Hosp, Dept Funct Neurosurg, Beijing, Peoples R China; [41]Univ Florida, Dept Neurol Surg, Gainesville, FL USA; [42]Univ Rochester, Dept Neurol, Med Ctr, Rochester, NY USA; [43]Marquette Univ, Dept Psychol, Milwaukee, WI 53233 USA; [44]Univ Florida, J Crayton Pruitt Family Dept Biomed Engn, Gainesville, FL USA
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关键词: Tourette syndrome deep brain stimulation database registry tics regulatory agencies

摘要:
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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出版当年[2015]版:
大类 | 2 区 医学
小类 | 3 区 神经科学
最新[2023]版:
大类 | 3 区 医学
小类 | 3 区 神经科学
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Q2 NEUROSCIENCES
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Q2 NEUROSCIENCES

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第一作者:
第一作者机构: [1]Univ Florida, Dept Neurol, Gainesville, FL USA; [2]Ctr Movement Disorders & Neurorestorat, Gainesville, FL USA;
通讯作者:
通讯机构: [1]Univ Florida, Dept Neurol, Gainesville, FL USA; [2]Ctr Movement Disorders & Neurorestorat, Gainesville, FL USA;
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