The Attention Deficit/Hyperactivity Disorder (ADHD) Genetic Research Study is exploring the genetic factors that contribute to ADHD, with the hope of improving treatment for this condition in the future.

Overview

ADHD often appears to run in families, and research studies have suggested that there may be a genetic component to this disorder. Individuals diagnosed with ADHD may have close blood relatives with the disorder. Scientists believe that ADHD is a complex disorder that probably involves at least two genes. Non-genetic causes such as abnormal brain development, brain injury or environmental factors are also believed to play a role in the disorder.

One of the long-range goals of this study is to facilitate the diagnosis of ADHD and the development of improved treatments, possibly including individually tailored treatments. Discovering the genes that are related to ADHD can only be done with the assistance of children that have ADHD and their 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.

The study is not a diagnostic service for ADHD, a treatment or advice service, or a "second opinion" service.

Eligibility

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.

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.

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 using the contact information below, 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.

What's Involved?

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.

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. Research results from blood sample analysis will not be made available to participating families.

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.

Contact Information

By Phone (Toll Free):
1-800-411-1222

By Fax:
Fax: (301) 480-7825
Attention: Research Coordinator/ADHD Genetic Research Study
Download and complete the contact form.

By Mail:
Research Coordinator/ADHD Genetic Research Study
NHGRI / NIH
Building 10, Room 10C103
10 Center Drive
Bethesda, MD 20892

Contact

Maximilian Muenke, M.D.
Maximilian Muenke, M.D.
  • Chief & Senior Investigator
  • Medical Genetics Branch

Last updated: March 17, 2014