The ADHD Genetic Research Study at the National Institutes of Health and The National Human Genome Research Institute
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Frequently Asked Questions About Our Study
What is this study about?
The purpose of our study is to look for the genetic factors that contribute to ADHD, with the hope of improving treatment for this condition in the future.
The study is NOT:
- A diagnostic service for Attention Deficit/Hyperactivity Disorder.
- A treatment or advice service.
- A "second opinion" service.
Who can participate in this study?
Because this is a genetic study, the children must be related by blood (not adopted or fostered) to the parents and to each other. Eligible families must have more than one child. At least one of the children between the ages of 7 and 18 must have a diagnosis of ADD or ADHD. Other children in the family may be either affected (have ADHD) or unaffected (not have ADHD), but must be at least 7 years of age at the time of enrollment. We would like to enroll entire families, both biological parents included, whenever possible.
What will I be asked to do if I volunteer for the study?
If you are interested, one of our team members will call you to take screening information and to explain details of the study and to answer your questions. If we determine that your family might qualify for the study, you will be sent informed consent forms and questionnaires in the mail for each potential enrollee in the study. The questionnaires will ask about past medical and behavioral histories. These questionnaires take approximately 10 to 20 minutes each to complete.
An additional telephone questionnaire with a staff member may also take place, which may take about 45 minutes for each child enrolled.
Once all information is obtained, it will be reviewed by the ADHD team members. If your family is eligible for the next level of our study, a blood collection kit will be sent to you to take to your health care provider to have your blood drawn and sent to us. All the instructions for obtaining the blood and mailing it back to us will be in the kit.
As with all of our research studies, participation is completely voluntary. You may decide to participate in the study but later change your mind. You may withdraw your consent to participate at any time.
How will information about my family be kept private?
Personal information that is given to us by study participants is kept confidential. Blood samples are given a code that does not include your name. Information about you is kept in locked cabinets or password protected computer files.
Is there any cost involved in participation?
No. There is no cost to you, the participant. NIH will cover screening and blood draw costs. In addition, we will provide a "thank you" gift ($10) to each participant for his or her involvement once we have received blood samples.
Why should my family and I participate in this study?
Discovering the genes that are related to ADHD can only be done with the assistance of children that have ADHD and their families. Research results from blood sample analysis will not be made available to participating families. By volunteering for this type of study, we believe that you and your family will help to bring about the benefits of research: improved diagnoses and treatment for future generations and, eventually, prevention.
How do I enroll in this study?
If you are interested in learning more about the study and/or participating in the study, please fill out the downloadable questionnaire  and send it to us, or call the toll free number (1-888-226-6249). We will contact you as soon as possible. Participation is completely voluntary. Indicating interest in the study does not obligate you to participate. Even if at first you decide to participate but later change your mind, you can withdraw at any time.
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Last Reviewed: July 25, 2008
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