Movement Disorders

[cnicotr1]

My name is Cassie Nicotra, and I am a research assistant in the Psychiatry Department of the Johns Hopkins Medical Institution. We are currently conducting a study which looks at the genetic factors that may contribute to Tourette's Syndrome. Here is a summary of the study and then a step-by-step explanation of all that is required of participants:

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.


Requirements:

1. Screen- this is just a few general questions about your daughter to ensure that she is eligible (this can be done over the phone and should not take more than 15 minutes)

2. Consent- this is when we will explain, in detail, all aspects of the study and answer any questions you may have (this is the only step that must be done in person)

3. Blood Sample- this small sample can either be done here, at Johns Hopkins, or you can get it taken at your regular doctor's office and mail the blood kit back to us (we will reimburse you for any necessary fees to get this done)

4. Packets- these are a series of different questionnaires inquiring about a variety of topics (these can be mailed as well)

5. Interview- this is a short conversation that the research leader (Dr. Grados) would like to have with you after you complete the study (this can be done over the phone as well)


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Thank you very much for taking the time to read this and considering participating. We really hope this research will make tremendous positive contributions regarding the treatment of Tourette's Syndrome!