TSA DBS Registry
An International Database for Deep Brain Stimulation Research in Tourette Syndrome
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Dr. Mauro Porta
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DBS Poster
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Treating Tourette Syndrome with Deep Brain Surgery
by Christine Ottery, 03/29/11
http://dana.org/news/features/
detail.aspx?id=31548
DBS Contributor Dr. Takanobu Kaido's article in Neuromodulation, 01/14/2011, Deep Brain Stimulation for Tourette Syndrome: A Prospective Pilot Study in Japan
Tourette syndrome (TS) is a complex neurodevelopmental disorder that affects children, adolescents and adults world-wide. The condition is characterized clinically by sudden, rapid, recurrent, non-rhythmic movements and sounds called motor and vocal/phonic tics, respectively.
Deep brain stimulation (DBS), which is the electrical stimulation of specific regions of the brain using surgically implanted probes (electrodes), is under investigation as a potential therapy for severe, self-injurious, disabling tics which often do not respond to drug or behavioral therapy. Some individuals with severe TS have already received DBS therapy and have experienced significant benefit, but many others have shown little or no improvement in symptoms. Thus, DBS remains an experimental therapeutic approach and is not currently approved by the FDA for treating TS.
The national Tourette Syndrome Association, Inc. (TSA) has now established this international registry/database to collect methodological and outcome details of previous, ongoing and future studies of DBS in TS. This initiative aims to encourage physicians, neurosurgeons, scientists and other professionals working in the fields of DBS and TS to collaborate, share data, discuss ideas and approaches, etc., so as to advance the development of this surgical intervention as a treatment option for some cases of TS.
Deep brain stimulation (DBS), which is the electrical stimulation of specific regions of the brain using surgically implanted probes (electrodes), is under investigation as a potential therapy for severe, self-injurious, disabling tics which often do not respond to drug or behavioral therapy. Some individuals with severe TS have already received DBS therapy and have experienced significant benefit, but many others have shown little or no improvement in symptoms. Thus, DBS remains an experimental therapeutic approach and is not currently approved by the FDA for treating TS.
The national Tourette Syndrome Association, Inc. (TSA) has now established this international registry/database to collect methodological and outcome details of previous, ongoing and future studies of DBS in TS. This initiative aims to encourage physicians, neurosurgeons, scientists and other professionals working in the fields of DBS and TS to collaborate, share data, discuss ideas and approaches, etc., so as to advance the development of this surgical intervention as a treatment option for some cases of TS.
·July 17, 2011—Dr. William S. Anderson – The Johns Hopkins University becomes a Contributor/member of the Data Sharing Committee
·March 31, 2011—Dr. Kelly D. Foote - University of Florida becomes a Contributor/member of the Data Sharing Committee
·December 29, 2010—Dr. Andreas Hartmann - Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·December 24, 2010—Dr. Soledad Navarro - Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·December 23, 2010—Dr. Carine Karachi - Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·December 15, 2010—Dr. Takanobu Kaido - National Center Hospital of Neurology and Psychiatry in Japan, becomes a Contributor/member of the Data Sharing Committee
·December 15, 2010—Dr. Alberto Priori - University of Milan becomes a Contributor/member of the Data Sharing Committee
·November 10, 2010—TSA DBS Database Conference call on Registry; Dr. Yves Agid - ICM, Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·November 8, 2010—Dr. Marie Vidailhet - CRICM, UPMC/INSERM, Pierre Marie Curie University becomes a Contributor/member of the Data Sharing Committee
·November 5, 2010—Dr. Luc Mallet - INSERM, CRICM-CIC CHU Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·November 3, 2010—Dr. Marie-Laure Welter - Groupe Hospitalier Pitie-Salpetriere, AP-HP becomes a Contributor/member of the Data Sharing Committee
·November 3, 2010—Dr. Andres Lozano of University - Toronto becomes a Contributor/member of the Data Sharing Committee
·October 27, 2010—Dr. Roger L. Melvill - Constantiaberg Medical Clinic becomes a Contributor/member of the Data Sharing Committee
·October 19, 2010—Dr. Suketu Khandhar - Kaiser Permanente becomes a Contributor/member of the Data Sharing Committee.
·October 4, 2010—Dr. Mauro Porta - IRCSS Galeazzi S.p.A. becomes a Contributor/member of the Data Sharing Committee
·October 4, 2010—Dr. Domenico Servello - IRCCS Galeazzi S.p.A. becomes a Contributor/member of the Data Sharing Committee
·September 23, 2010—Dr. Lauren Schrock - University of Utah becomes a Contributor/member of the Data Sharing Committee
·August 30, 2010—Dr. Paul Larson - University of California- San Francisco/ San Francisco VA Medical Center becomes a Contributor/member of the Data Sharing Committee
·August 20, 2010—Dr. James Leckman - Yale University Child Study Center becomes a Contributor/member of the Data Sharing Committee
·August 19, 2010—Dr. Amber Stocco - Baylor College of Medicine becomes a Contributor/member of the Data Sharing Committee
·August 11, 2010 - Dr. Benjamin Walter - Case Western Reserve University becomes a Contributor/member of the Data Sharing Committee
·August 10, 2010 - Dr. Alon Mogilner - North Shore Long Island Jewish Health System becomes a Contributor/member of the Data Sharing Committee
·August 3, 2010 - Dr. Michael Pourfar - North Shore Long Island Jewish Health System becomes a Contributor/member of the Data Sharing Committee
·July 6th 2010 - First day of Project Coordinator on the TS DBS Database project
·December 11-12, 2009 - Tourette Syndrome Association, inc. Second DBS meeting Miami, FL
·September 1-2, 2004 - Tourette Syndrome Association, Inc. DBS meeting, Stresa, Italy
·March 31, 2011—Dr. Kelly D. Foote - University of Florida becomes a Contributor/member of the Data Sharing Committee
·December 29, 2010—Dr. Andreas Hartmann - Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·December 24, 2010—Dr. Soledad Navarro - Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·December 23, 2010—Dr. Carine Karachi - Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·December 15, 2010—Dr. Takanobu Kaido - National Center Hospital of Neurology and Psychiatry in Japan, becomes a Contributor/member of the Data Sharing Committee
·December 15, 2010—Dr. Alberto Priori - University of Milan becomes a Contributor/member of the Data Sharing Committee
·November 10, 2010—TSA DBS Database Conference call on Registry; Dr. Yves Agid - ICM, Hopital Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·November 8, 2010—Dr. Marie Vidailhet - CRICM, UPMC/INSERM, Pierre Marie Curie University becomes a Contributor/member of the Data Sharing Committee
·November 5, 2010—Dr. Luc Mallet - INSERM, CRICM-CIC CHU Pitie-Salpetriere becomes a Contributor/member of the Data Sharing Committee
·November 3, 2010—Dr. Marie-Laure Welter - Groupe Hospitalier Pitie-Salpetriere, AP-HP becomes a Contributor/member of the Data Sharing Committee
·November 3, 2010—Dr. Andres Lozano of University - Toronto becomes a Contributor/member of the Data Sharing Committee
·October 27, 2010—Dr. Roger L. Melvill - Constantiaberg Medical Clinic becomes a Contributor/member of the Data Sharing Committee
·October 19, 2010—Dr. Suketu Khandhar - Kaiser Permanente becomes a Contributor/member of the Data Sharing Committee.
·October 4, 2010—Dr. Mauro Porta - IRCSS Galeazzi S.p.A. becomes a Contributor/member of the Data Sharing Committee
·October 4, 2010—Dr. Domenico Servello - IRCCS Galeazzi S.p.A. becomes a Contributor/member of the Data Sharing Committee
·September 23, 2010—Dr. Lauren Schrock - University of Utah becomes a Contributor/member of the Data Sharing Committee
·August 30, 2010—Dr. Paul Larson - University of California- San Francisco/ San Francisco VA Medical Center becomes a Contributor/member of the Data Sharing Committee
·August 20, 2010—Dr. James Leckman - Yale University Child Study Center becomes a Contributor/member of the Data Sharing Committee
·August 19, 2010—Dr. Amber Stocco - Baylor College of Medicine becomes a Contributor/member of the Data Sharing Committee
·August 11, 2010 - Dr. Benjamin Walter - Case Western Reserve University becomes a Contributor/member of the Data Sharing Committee
·August 10, 2010 - Dr. Alon Mogilner - North Shore Long Island Jewish Health System becomes a Contributor/member of the Data Sharing Committee
·August 3, 2010 - Dr. Michael Pourfar - North Shore Long Island Jewish Health System becomes a Contributor/member of the Data Sharing Committee
·July 6th 2010 - First day of Project Coordinator on the TS DBS Database project
·December 11-12, 2009 - Tourette Syndrome Association, inc. Second DBS meeting Miami, FL
·September 1-2, 2004 - Tourette Syndrome Association, Inc. DBS meeting, Stresa, Italy
June 5-9, 2011
MDS 15th International Congress of Parkinson's Disease and Movement Disorders - Toronto,ON,Canada
Monday June 6, 2011
2210 Parallel Session
Gilles de la Tourette syndrome
15:30-17:30 Chairs: Jonathan Mink, Rochester, NY, USA; Paul Sandor, Toronto, ON, Canada
15:30 The circuitry of behavioral disorders: From animal models to Tourette Syndrome - Yulia Worbe, Paris, France
16:10 Clinical features of Tourette syndrome - Mary Robertson London, United Kingdom
16:50 Update on treatments in Tourette syndrome - Jonathan Mink Rochester, NY, USA
Recommended Audience: Basic Scientists; Clinical Academicians; Practitioners; Students/Residents/ Trainees
MDS 15th International Congress of Parkinson's Disease and Movement Disorders - Toronto,ON,Canada
Monday June 6, 2011
2210 Parallel Session
Gilles de la Tourette syndrome
15:30-17:30 Chairs: Jonathan Mink, Rochester, NY, USA; Paul Sandor, Toronto, ON, Canada
15:30 The circuitry of behavioral disorders: From animal models to Tourette Syndrome - Yulia Worbe, Paris, France
16:10 Clinical features of Tourette syndrome - Mary Robertson London, United Kingdom
16:50 Update on treatments in Tourette syndrome - Jonathan Mink Rochester, NY, USA
Recommended Audience: Basic Scientists; Clinical Academicians; Practitioners; Students/Residents/ Trainees
Tourette Syndrome Association, Inc.42-40 Bell Blvd.
Bayside, NY 11361
Agnes Njoh
DBS Project Coordinator
(718)224-2999 x226
dbsregistry@tsa-usa.org
You should not rely on the information posted on this Web Site as a substitute for consultations with qualified health
care professionals who are familiar with individual medical conditions and needs.
TSA strongly recommends that care and treatment decisions related to Tourette Syndrome and any other medical condition be made in consultation with
a patient's physician or other qualified health care professionals who are familiar with the specific individual's health situation.
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