UAB opened its Bachmann-Strauss Center of Excellence on Sept. 17, 2013, followed by centers at the University of Florida and the University of California San Francisco. The new centers will join the existing Center of Excellence at Beth Israel Medical Center in New York.Dystonia, which affects as many as 300,000 people in North America, is a movement disorder that causes the muscles to contract and spasm involuntarily. The involuntary muscle contractions force the body into repetitive, often twisting movements and awkward, irregular postures. It can affect the hands, feet, neck or other parts of the body. It may be genetic in origin or appear spontaneously, and dozens of diseases and conditions include dystonia as a major symptom.
“Dystonia has several forms and may be hereditary or caused by factors such as physical trauma, infection or reaction to a pharmaceutical, however most cases have no known cause,” said David G. Standaert, M.D., Ph.D., professor and chair of the UAB Department of Neurology. “Treatment is difficult and has been limited to minimizing the symptoms. At present, there is no cure.”
The Bachmann-Strauss centers will strengthen each university’s clinical and research infrastructure, while providing a mechanism through which they can share knowledge and collaborate on new initiatives. The new centers are expected to be catalysts for breakthroughs in understanding and treating dystonia and Parkinson’s disease. Matching grants will ensure that the centers are self-sustaining.
Since its 1995 founding by Bonnie Strauss, who herself has dystonia, The Bachmann-Strauss Dystonia and Parkinson Foundation has given $14 million to seed 225 research projects. The scientists involved were able to leverage that funding to secure an additional $60 million from the National Institutes of Health.
Standaert said the grant will enhance clinical care and research at UAB, as well as allow the university to recruit additional faculty researchers and clinicians who will focus on dystonia, pursuing promising, novel research projects and accelerating ongoing research projects aimed at developing treatments and cures.
“We will also establish a dystonia navigator, a full-time position within the Department of Neurology,” said Standaert. “The navigator will coordinate clinical care for patients with dystonia, as well as provide links to research projects.”
UAB has the only program for movement disorders in Alabama and serves dystonia and Parkinson’s patients from Mississippi, Florida, Tennessee, Georgia and Louisiana.
At the new center, dystonia and Parkinson’s patients will benefit from an integrated and coordinated approach to multi-disciplinary care that will include ease of access to movement disorder specialists, as well as physical, occupational and speech therapy. Services will also include diverse treatments including neurosurgery and genetic counseling.
UAB’s clinical research program is also strong. With 27 different clinical trial protocols in dystonia or Parkinson’s disease currently enrolling subjects or in active follow-up, and another dozen in a pre-implementation phase, UAB will also enhance patient access to clinical trials and train the next generation of dystonia and Parkinson’s disease clinicians and scientists through clinical and basic/translational fellowships.
“It can take more than a decade for a new therapy to go from the pre-clinical discovery stage to approval by the FDA for widespread use in humans,” said Standaert. “One of our primary goals is to have as many lines of research going as possible and accelerate the translational process, moving basic scientific discoveries from the laboratory to clinical use as rapidly and safely as possible.”
“As someone who lives with dystonia and struggled for years to find the right diagnosis, the opening of our new Center of Excellence at UAB is a dream come true,” said Bonnie Strauss, president and founder of The Bachmann-Strauss Dystonia and Parkinson Foundation. “Bringing together some of the world’s leading experts in dystonia and Parkinson’s disease under one roof will help to ensure that patients receive the best possible care. I congratulate Dr. Standaert and his team for all they have accomplished, and I look forward to working with them in the years to come.”