The University of Florida Health Center for Movement Disorders and Neurorestoration has been designated a Tourette Syndrome Association Center of Excellence.
To receive the designation, the UF center formed a consortium with four other medical centers across the Southeastern United States. The Southeast consortium was one of 10 centers in the United States to receive the designation.
“It was a highly competitive process and we were proud to be among the first designated as excellent for Tourette and tic care,” said Irene Malaty, M.D., medical director of the UF Interdisciplinary Tourette Clinic.
The Tourette Syndrome Association formed the program to help establish a standard of care for patients. The association plans to partner with the 10 centers of excellence to set a standard of care, increase access to treatment and accelerate research on Tourette syndrome and other related tic disorders.
Heather Simpson, OTR/L, an occupational therapist at UF Health, will be the coordinator for the entire Southeastern region of the U.S. The consortium includes Emory University School of Medicine in Atlanta, Medical University of South Carolina in Charleston, University of Alabama in Birmingham and the University of South Florida Morsani College of Medicine in St. Petersburg. Each location will be recognized as a center of excellence, and patient care, education and research will be available at all centers.
“Children and adults suffering from Tourette and tic disorders are underserved in the medical community, and the medical community is undereducated,” Simpson said. “We are trying to reach out and educate families, educate communities and educate children about this disorder.”
Simpson said the medical centers across the Southeast formed their own consortium in order to provide quality care to patients with Tourette and tic disorders across a wide geographic area. Malaty, also medical director of the UF National Parkinson Foundation Center of Excellence, says the regional center of excellence concept will help integrate and expand the centers’ medical teams and resources.
“The Tourette Syndrome Association has taken the innovative approach of including regional centers of excellence, encouraging the bridging of partnerships for the best possible care and collaboration in research for this underserved population,” Malaty said. “The TSA program will allow us to form care networks, increase patient access to services and to provide the best patient-centered care possible.”
The researchers obtained the designation through a grant application. Malaty was the principal investigator for the UF site. Michael S. Okun, M.D., co-director of the UF Health Center for Movement Disorders and Neurorestoration was the principal investigator for the consortium grant. The Tourette Syndrome Association sought centers that provided interdisciplinary care for patients with Tourette syndrome, including treatment from neurologists, psychiatrists, social workers, and physical and occupational therapists. Centers were also evaluated for their proficiency, dedication to research and access to new therapies, such as deep brain stimulation.
Specifically, the association looked for centers that used a therapy called the comprehensive behavior intervention for tics. The therapy teaches children how to recognize a tic is about to occur, then teaches them to perform a behavior that conflicts with the tic. Simpson has worked with many patients using this intervention, and the treatment results have been promising, Okun said.
“It is important to recognize that this designation is a move toward improving care, access and research for patients with Tourette syndrome,” Okun said. “Previous to these designations, there was no way to strategically develop models of care and research collaborations across the United States. We are proud to have been designated on the first round of these grants.”
The UF Health Center for Movement Disorders and Neurorestoration will be featured on an upcoming episode of CNN International’s Vital Signs, a show hosted by Sanjay Gupta, M.D., which brings viewers health stories from around the world. The episode will premiere at 5:30 a.m. and 12:30 p.m. on Wednesday, Oct. 15. It will air six more times through the month of October and can be viewed online at movementdisorders.ufhealth.org.