AED PREGNANCY REGISTRY
Massachusetts General Hospital, Harvard Medical School

Why: To obtain information about the potential risk of each antiepileptic drug.

Recruiting: Women who are pregnant and are taking AEDs for any reason

The Antiepilepsy Drug (AED) Pregnancy Registry is the first North American registry for pregnant women who are taking antiepileptic drugs. The registry is maintained out of the Genetics and Teratology Unit of Massachusetts General Hospital, Harvard Medical School, Boston.

Women who enroll will have a total of three telephone interviews during their pregnancy and postpartum. All information will be kept confidential. The findings will be analyzed to assess the fetal risk of AED use during pregnancy. The principal investigator for the registry is Lewis B. Holmes, MD.

To enroll, call toll-free 1-888-233-2334 or 1-888-AED-AED4

For more information, visit the AED Pregnancy Registry website http://www.aedpregnancyregistry.org/

Why: To identify genes that play a role in causing epilepsy.

Recruiting: Family that contains a pair of siblings (brothers&/or sisters) OR three or more living people with:

• A history of epilepsy (even if they no longer have seizures now)
• Unknown cause of epilepsy (i.e., it is not associated with mental retardation and not explained by another illness or event such as a stroke, brain tumor, or severe head injury).

Funded by the National Institutes of Health, the Epilepsy Family Study of Columbia University is attempting to determine the role of heredity in epilepsy by identifying specific genes related to epilepsy. Identification of the genes that raise risk for epilepsy is potentially very important for early identification and treatment of susceptible individuals. It could also provide important basic information about the causes of epilepsy. This information could lead to the development of new treatments or strategies for prevention. The chief researcher for this project is Dr. Ruth Ottman, Professor of Public Health at Columbia University.

Volunteers have a telephone interview and are asked to donate a blood sample. There is no cost to participants for any aspect of the study and all information will be kept strictly confidential. This study does not involve genetic testing.

To volunteer, or to find out more about the study, you can call or write to:

Christie Barker-Cummings, M.P.H.
Columbia University
G.H. Sergievsky Center
630 West 168th Street
P&S Box 16
New York, NY 10032
(212) 305-9188

Or visit the Epilepsy Family Study at Columbia University website
http://www.epilepsygenetics.org/

Why: To facilitate the search for the genes associated with epilepsy

Recruiting: People who have epilepsy in their family

The Gene Discovery Project of the Epilepsy Foundation of America seeks to partner people who have epilepsy in their family with researchers who are looking for the epilepsy genes.

The process:

• Participants build their family tree online and answer questions about epilepsy in their family
• Research scientists select family trees that may qualify for their research study.
• If the family tree is selected, the Epilepsy Foundation sends the participant information about the research study that matches his/her family history of epilepsy
• Then, the participant may contact the researcher, learn about their study and decide whether to participate in the research.

Participants must be over 18 and have at least one person in their family affected by epilepsy. They also must have an email address to enter information online. All family tree and contact information is confidential and private. Identity and family information are anonymous to the research scientists until the participant contacts them directly.

For more information or to participate, go to the Epilepsy Foundation Gene Discovery Project webpage -http://www.efa.org/gdp/index.html

For information on epilepsy research and other clinical trials that are now recruiting volunteers, visit Epilepsy Foundation Research webpage - http://www.efa.org/research/index.html

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