Frequently Asked Questions (FAQ):
2. Is free parking available at MGH?
4. What are the possible benefits from being in this research study?
5. What will I have to pay for if I take part in this research study?
7. Can any interviews be completed over the phone?
8. How long do the phone interviews last?
9. What is the time commitment for the Genetic Family Study of TS, OCD, & ADHD?
10. What is the time commitment for the Genetic Linkage Study of TS?
11. Do I have to complete all of the testing in one day?
17. What is involved in the blood draw?
18. Is participation in the studies confidential?
19. Will my child receive medication or treatment as part of study participation?
23. If I have questions or concerns about this research study, who can I call?
1. Can visits take place at my home?
Yes. Although we prefer to schedule visits at MGH in Boston, we can also come to your home if it is more convenient for you. We require separate, enclosed rooms for each member of the family in order to complete the tests. It is very important that each room is enclosed to prevent any noise distraction during testing, especially during memory and attention tasks.
2. Is free parking available at MGH?
Yes. We offer free parking to all families who schedule visits with us at MGH. The parking garage is a short walk from our building. Please refer to our Directions link for more information.
3. Will I be paid to take part in this research study?
As a thank you for participating in the Family Genetic Study of TS, OCD, and ADHD, your family will receive a total of $100 following completion of all the components of the study. Additionally, each participating child in the family will receive a $10 gift card from either Target for completing their study activities. We will reimburse you for parking and food expenses if your study visit(s) take place at the
4. What are the possible benefits from being in this research study?
Although participation will not provide any direct or immediate benefit to you or your family, we hope that these research studies will help us understand more about why TS, ADHD, and OCD occur in some families. The studies may also improve our understanding of genetic risk factors for neurological and other illnesses. It is hoped that the knowledge gained from the studies may help researches find improved therapy for all families who are affected by these disorders.
5. What will I have to pay for if I take part in this research study?
The interview, cognitive tests, DNA testing, and all other procedures in this study will be done at no cost to you. If you use an outside lab for the blood draw, we will cover those costs.
6. Can I schedule a visit in the evening or on the weekend?
Yes. We can accommodate evening and weekend visits, as well some holiday visits, either at MGH or at your home.
7. Can any interviews be completed over the phone?
Yes. Most families prefer to complete some of the interviews over the phone.
8. How long do the phone interviews last?
The phone interviews last for approximately a total of 1-2 hours per person. Parents complete the phone interviews for themselves and for any child under the age of 17.
9. What is the time commitment for the Genetic Family Study of TS, OCD, & ADHD?
Study participation will require a total of approximately 3-6 hours per person, depending on whether you are completing interviews for yourself only or for your children as well. There are four main components to be completed for study participation:
1) Cognitive testing, which requires approximately 2-3 hours per family member. This assessment must be completed in person during the study visit.
2) Clinical Interviews requiring approximately 1-2 hours per family member. Some parents will also complete the interviews for their children. These clinical interviews can typically be conducted over the phone.
3) Questionnaires that may require about 1 hour per family member to complete. We will give you the packet of questionnaires to complete at home and then send back to us. Parents may be asked to complete some of the questionnaires for their children.
4) Blood draw is the final component, which takes about 10 minutes per person. If we cannot obtain a blood sample, we will ask you for a saliva sample.
10. What is the time commitment for the Genetic Linkage/Association Study of TS?
Your study participation will require a total of approximately 1-2 hours per person. A parent may be completing interviews and questionnaires for their child with TS.
There are two main components to be completed for the Genetic Linkage/Association study:
1) Interviews/Questionnaires requiring approximately 1-2 hours per person. Some parents also complete the questionnaires for their children.
2) Blood draw which takes about 10 minutes per person.
11. Do I have to complete all of the testing in one day?
Typically, you will complete the cognitive tests during one study visit. If you or someone in your family has difficulty completing 2-3 hours of testing in one session, we can arrange to complete the assessment in two visits. The questionnaires will be given to you during the first visit and are to be completed at home and mailed back to us. The interviews are usually completed over the phone and will be scheduled for a later date of your choice.
12. What kinds of cognitive tests are administered?
The cognitive tests (administered for the Genetic Family Study only) consist of activities focusing on attention, problem solving, hand-eye coordination skills, and memory. Some of these tests are done on the computer.
13. For the Family Genetic Study, can all of my family members complete the cognitive assessments at the same time?
Yes. Each family member will pair off with a trained research assistant to complete his or her assessment during the in-person visit. For families of six or more people, we need to make special arrangements to be sure that enough researchers are available; for larger families, it is also possible to schedule two separate visits, with each individual participating only once.
14. What kinds of questionnaires are administered?
The questionnaires for both studies (the Genetic Linkage/Association Study of Tourette Syndrome and the Family Genetic Study of TS, ADHD and OCD) gather information about social behaviors and psychiatric history. Additional questionnaires for the Family Genetic Study consist of questions relating to sensory sensitivity, attention and impulsivity, executive functioning, organization, and other behaviors. If you participate in both studies, you will only need to complete the questionnaires once. Please note that all information is kept confidential.
15. What kinds of interviews are administered?
The interviews (the same set is administered for both Genetic Family Study and Genetic Linkage/Association Study) ask if you have had any of the symptoms commonly seen in TS, OCD, and ADHD. We will also ask you basic demographic questions, review any medications you may have taken, and in if this information is available, ask about prenatal/early developmental history. Please note that all information obtained during the interviews is strictly confidential, and you have the right to refuse to answer any questions you choose.
16. Are all family members required to participate?
For the Genetic Family Study of TS, ADHD, & OCD we require participation from the affected child (who must be age 6 or older), both biological parents, as well as any siblings over the age of 6. For the Genetic Linkage/Association Study of TS we require participation from the individual diagnosed with TS. If this is a child, then we would also request the involvement of a parent to complete the consent forms, interviews and questionnaires.
17. What is involved in the blood draw?
To collect your DNA, one of our phlebotomists (a person specifically trained to do blood draws) will draw a small amount of blood (about 2 tablespoons) from your arm. If we are unable to get a blood sample, we will collect a saliva sample instead.
18. Is participation in the studies confidential?
Yes, all information obtained during testing, as well as your name and contact information, are kept strictly confidential. All information we collect is coded with study-specific ID numbers for identification - your name is never recorded on any of the interview or testing materials. We will not discuss any of your information that you share with us with anyone who is not working on these research studies. In addition, none of your data will be released to your doctor or become part of your medical record.
19. Will my child receive medication or treatment as part of study participation?
No. There is no medication or treatment component to our studies.
20. Do you offer a full neuropsychological evaluation as part of study participation?
No. The cognitive tests that we administer were selected for research purposes only and thus this assessment cannot take the place of a clinical or school-based neuropsychological assessment. We can, however, release scores on the cognitive tests to you and these may help you to decide whether a formal neuropsychological assessment is warranted.
21. I do not live in
Yes. If you live in the
22. Can I participate in both the Genetic Family Study of TS, ADHD & OCD and the Genetic Linkage/Association Study of TS? Yes. If you qualify, you may participate in both studies. The interviews given in the Genetic Family Study are the same as those given in the Genetic Linkage/Association Study. Should you choose to participate in both studies, you only need to complete the interviews once.
23. If I have questions or concerns about this research study, who can I call?
Please feel free to call or e-mail us with any questions or concerns that you may have. Our project director, Cornelia Illmann, Ph.D., can be reached at 1-800-471-2730 (option 2), or cillmann@partners.org.
Thank you!
We want to extend a sincere thank you to all of the
families who participate in
our studies.
Everything we have learned so far and everything we will learn in the future is made possible by your generous participation.
Participate
in our research!
Help us learn more about Tourette
Syndrome (TS), Attention Deficit Hyperactivity Disorder (ADHD),
and Obsessive Compulsive
Disorder (OCD).
Click here
to learn how!
185 Cambridge Street, Boston, MA 02114. Tel: 617 726-0891. Toll Free: 800 471-2730. E-mail us
