Email this pageRochester Leads Study for New Treatment for Tourette’s
The University of Rochester Medical Center is leading a multi-center clinical research study of a new experimental treatment for Tourette’s syndrome. The study is examining whether pramipexole, a drug widely used to treat patients with Parkinson’s disease, can alleviate symptoms of Tourette’s.
The tics characteristic of Tourette’s syndrome -- usually abrupt and involuntary vocal outbursts or muscular jerks – are among the most troubling and disabling symptoms for patients. While many individuals with the syndrome have a mild form and do not require medical intervention, patients with more severe forms are currently treated with various antipsychotic drugs.
“While the precise mechanism that causes Tourette’s is unknown, we have long observed that the neuro-chemical dopamine is overly active in individuals with the disease,” said neurologist Roger Kurlan, M.D., the study’s principal investigator. “This chemical imbalance in the brain may play a role in the disease and, consequently, the drugs that are currently used to treat the disease are known to suppress dopamine production. However, these drugs are also associated with severe side effects that often deter their use.”
Kurlan and his colleagues are studying the use of pramipexole, which is approved by the Food and Drug Administration for use in patients with Parkinson’s disease and restless leg syndrome. Pramipexole stimulates dopamine production in the brain, and small pilot studies with the drug in Tourette’s patients have shown good outcomes and few side effects.
“It would seem to be counter-intuitive to stimulate more chemical activity in the brain when we know that there already is an imbalance in Tourette’s patients,” said Kurlan. “However, we believe that this might actually cause the dopamine receptors in the brain to adapt and desensitize so that they start reacting less to the overactive dopamine.”
Kurlan is the head of the Tourette’s Syndrome Study Group, an international network of researchers that is involved in almost every major clinical study of the disease. It was work by Kurlan and his colleagues in 2001 in schools in the Rochester area that demonstrated that Tourette’s is far more prevalent than previously realized. His research found that one in four children in special education programs exhibited some form of tics or TS, and that the rate in the general population appears much higher than was once thought.
Kurlan first became aware of the possible extent of the disorder in 1983, when a man who had been diagnosed with Huntington’s disease hitchhiked more than 2,000 miles to seek a second opinion from Kurlan. The man actually had Tourette’s, and within an hour – the most astonishing moment in his career, Kurlan recalls – the patient had described 20 relatives with similar symptoms.
Kurlan put together a research team to visit the isolated village in northern Alberta which the patient called home, for a study of the genetic roots of Tourette’s. The Mennonite community of 700 was made up heavily of descendants of a single Russian ancestor, and tales of Tourette’s-like behavior were rife.
“After several flights, we arrived at the six-room hotel in town, and the very first person we met, the man checking us in at the hotel, had obvious Tourette’s. We looked at each other in total amazement. We knew we had come to the right place,” Kurlan says. Through interviews and exams of the man’s relatives, the team ultimately found about 200 members of the extended family of 2,500 people with the disorder.
Kurlan thinks that the rate of Tourette’s has been underestimated because the patients who seek out treatment in a doctor’s office are usually those with the most severe symptoms. In past studies, doctors have relied on questionnaires and a review of medical records to identify patients without conducting direct interviews or exams.
Kurlan and his colleagues have also been instrumental in establishing the hereditary nature of the disease, helping to dispel the previously held notion that the syndrome is a psychological disorder.
Kurlan and his colleague Jonathan Mink, M.D., Ph.D., also run one of the larger Tourette’s clinics in the country. At any one time, Rochester physicians are following more than 2,000 patients from across upstate New York and northern Pennsylvania.
