Tourette Association of America Expands International Deep Brain Stimulation Registry

BAYSIDE, N.Y. - Aug. 12, 2015 - PRLog -- The Tourette Association of America is pleased to announce the expansion and further development of the Association’s registry for the global collection of safety and outcomes data associated with the use of Deep Brain Stimulation (DBS) as an investigational treatment option for individuals with severe Tic Disorders. The registry will collect and facilitate the analysis of existing and future data from DBS procedures conducted across the world.

Tic Disorders, including Tourette Syndrome (TS), are neurodevelopmental disorders characterized by the appearance of involuntary movements and sounds called tics. These conditions can develop in children, adolescents and adults. While most patients with Tic Disorders either do not need medication or respond positively to drug and behavior therapy, others struggle to live with severe, self-injurious and debilitating tics that do not respond to existing treatments.

Michael S. Okun, M.D., a University of Florida professor of neurology who manages the Tourette Association project said this program has been very successful to date in attracting more than 40 physicians, neurosurgeons, neurologists, psychiatrists, neuroscientists and other experts from 12 countries to participate in and/or submit data to the registry. Okun is co-director for the UF Health Center for Movement Disorders and Neurorestoration, which houses a Southeast Regional Tourette Association of America Center of Excellence.

“We encourage others to join this international project and to inform the field about brain targets, programming parameters, patient selection criteria, adverse effects, and other critical factors which will be necessary to develop DBS as a therapy for severe, intractable tics,” Okun said.

Over the past 15 years, many individuals with Tic Disorders have received DBS treatment in the United States and abroad. DBS therapy for Tic Disorders remains an investigational therapy and while some patients have had successful reduction of tics, there is still significant research needed in this field.

“Long term, the Tourette Association Registry has the potential to provide critical information that can guide clinical strategies and best practices for medical and surgical management of intractable Tic Disorders.  Formation of registries and databases for these new procedures will be a vital step in the road forward,” said Kevin St. P. McNaught, Ph.D., Tourette Association’s Vice President for Research and Medical Programs.

The Tourette Association Registry is supported in part by a grant from Medtronic. The grant is structured as a multi-year agreement to advance the development and expansion of the Tourette Association’s International Registry. “We are excited to support the Tourette Association’s commitment to advance research in areas such as patient selection to inform future clinical studies,” said Lothar Krinke, Ph.D., Vice President and General Manager of the Brain Modulation business at Medtronic.

About the Tourette Association of America

Founded in 1972, the Tourette Association of America is dedicated to making life better for all individuals affected by Tourette and Tic Disorders. The only nationwide organization serving this community, the Association works to raise awareness, fund research and provide on-going support. The Tourette Association directs a network of 32 Chapters and support groups across the country.  For more information on Tourette and Tic Disorders, call 1-888-4-TOURET, visit www.tourette.org, and on Facebook, Twitter, Instagram and YouTube.

About the University of Florida Health Center for Movement Disorders and Neurorestoration

The University of Florida Health Center for Movement Disorders and Neurorestoration was founded on the philosophy that integrated, interdisciplinary care is the most effective approach for people with movement disorders (e.g. Parkinson, dystonia, tics, etc.) and disorders involving a group of circuits in the brain called the basal ganglia. All specialists work together in an avant-garde, side-by-side arrangement with clinical services, an automatic gait and balance machine, rehab services, a MRI, a swallow suite, laboratory space, a database, a telemedicine room and dedicated clinical trials space. The space and architecture plan are unique, and everything about the Center is patient-centric, including the art on the walls, which has been created and donated by UF Health patients.  The Center follows more than 8000 patients, many of whom travel from international locations for their care and for access to research.