TS STUDY, VOLUNTEERS NEEDED

Study’s Focus: Understanding the Anatomy and Physiology of the Sensory Experience and its Role in Generating Tics in Tourette Syndrome.

Protocol Number: 08-N-0215

Summary:

This study will investigate the sensation that many people with Tourette Syndrome (TS) experience before they have a motor tic. It will also test whether blocking the sensation causes the tic to stop.

People between 18 and 65 years of age with TS who have at least one tic involving an arm may be eligible for this 3-part study. Those enrolled may participate in some or all parts of the study. All must stop taking medication for TS and any other medication that may affect the brain for at least 1 week prior to the study.

Part 1 – After numbing the skin or muscles of the arm or leg where a pre-tic sensation is experienced, the response of the nerves will be tested by asking subjects to rate the strength of the sensation after a pinprick and by stimulating the nerves with small electrical shocks. Then, over the course of approximately one hour, subjects will report pre-tic sensations while their motor tics are counted. The onset of each tic will be identified with EMG, a test using electrodes on the skin to indicate the activity of the muscles.

Part 2 – Subjects' brain waves are recorded using magnetoencephalography (MEG) while they are experiencing tics andpre-tic sensory experiences. MEG is a test that records magnetic field changes produced by brain activity. Subjects sit in a chair under a dome containing magnetic field detectors. They watch a clock and report the time a sensory experience starts. Tics are recorded with EMG. Later, a standard MRI of the brain (scan using a magnetic field and radio waves) is done to see which parts of the brain produced the activity recorded with MEG.

Part 3 – Repetitive transcranial magnetic stimulation (rTMS) is used to try to stop the pre-tic sensations. For TMS, the subject sits in a chair. A wire coil is held on the subject's scalp, and a brief electrical current is passed through the coil, creating a magnetic pulse that stimulates a region of the brain. The goal of this stimulation is to reduce the sensory experience that precedes a tic in one region of the body. During stimulation, the subject hears a click and may feel a pulling sensation on the skin under the coil. There may be a twitch in the muscles of the face, arm or leg. This study uses a pattern of repeated pulses delivered in short bursts. Following each train of pulses, the effect of the stimulation on sensation will be tested by asking the subject to rate the strength of a pinprick and of a vibration. In addition, the nerves are stimulated with small shocks to evaluate the effect of the TMS on nerve activity. To determine the effect of TMS on the pre-tic Tourette Syndrome Genetics Study

What is the study about?

Research is being conducted to find the genes that are important in the development of Tourette syndrome. This study, sponsored by the Tourette Syndrome Association, will provide researchers with advanced information about Tourette syndrome and its relation to human genetics.

What Will Participation Involve?

Participating in the TS Genetics study will involve one visit to Johns Hopkins Hospital. Families - including the affected individual - will be asked to complete some self-report questionnaires and give a small amount of blood. Visits typically last 1-2 hours or up to 3 hours if the parents are participating. If your family is unable to travel to the hospital, special arrangements can be made for the researchers to travel to a more convenient location.

Who is Eligible to Participate?

Individuals (child or adult) diagnosed with TS. Parents of the person with TS are also eligible to participate.

All children/adults with TS have to be available for a blood draw and interview; if biological parents are available they can also participate in a blood draw and interview.

Contact Information:
Marco Grados, M.D., M.P.H.
Home: 443-287-2292
mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

New Studies on Tourette Syndrome at NIH Need Participants! Two open studies address sensory sensitivity and the urge to tic

By Dr. Beth Belluscio

People with Tourette syndrome often describe that they are very sensitive to many aspects of their environment. This can involve sensations coming in through any or all of the 5 senses. In addition, many people describe a funny, uncomfortable sensation in their body which leads to the feeling that they want to tic. However, scientists have not yet focused on the sensory system in people with TS. Many questions need to be answered: are people with TS able to detect more sensory information? Are people with TS more aware of sensory stimuli? Where does the funny feeling before a tic come from? If this funny feeling could be stopped, would the tics stop too?

Dr. Beth Belluscio, a Neurologist working with Dr. Mark Hallett at the NIH, has recently begun two trials to try to answer some of these questions. She has an MD-PhD in neurobiology, with prior work focused on understanding the way nerves cells communicate and learn. She is now beginning to use that background to understand more about how nerve cells and the brain work in people with Tourette syndrome. Dr. Belluscio believes that there is much we do not understand about the importance of sensory input in many features of TS. She is interested in meeting people living with TS to better understand their experiences.

She will be available at the upcoming meeting in February to meet people and to explain her two NIH studies. Both studies will take place on an outpatient basis in the Clinical Center at the NIH campus in Bethesda. Both require participants to be aged 18-65 and to have a diagnosis of Tourette syndrome. Travel funds and compensation for time spent in the study are provided.

One of her studies focuses on determining the sensitivity of people with TS to external stimuli. It tests the sense of smell and touch as examples of input through the 5 senses. This study can be completed in one day. The second study focuses on finding out where the funny sensations that precede a tic come from. To try and prevent these sensations, local anesthesia (like novocaine) will be injected into a small area where the tic occurs. Participants will be asked to report on their sensations before and after the anesthesia and tics will be monitored to determine if they change following numbing of the area. This study will require 4-5 days (although not necessarily consecutively). In addition to these tests, participants in both studies will be asked to fill out several questionnaires to get a better sense of their entire experience of living with TS. They will also have a neurological exam and a structured interview regarding personality styles and mood.

In addition to talking with Dr. Belluscio at the meeting, people interested in volunteering to take part in the studies can contact Dr. Belluscio at 301-402-3495 or \n This e-mail address is being protected from spambots. You need JavaScript enabled to view it This e-mail address is being protected from spambots. You need JavaScript enabled to view it . She will be able to describe the studies in more detail, answer any questions about participation, and find out if interested people qualify. She will then set up an initial appointment to see her at the NIH, where informed consent will be completed. She is hopeful that a better understanding of the sensory aspect of TS will lead to better therapeutic approaches in the future.

Addition information about the studies is available through the NIH website, www.clinicaltrials.gov, and using the keywords “Tourette” and “sensory”, or by depressing the control key and clicking on: Tourette Syndrome Studies.