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How Can I Help Research on Epilepsy?

There are many ways that people with epilepsy and their families can help with research on this disorder. Pregnant women with epilepsy who are taking antiepileptic drugs can help researchers learn how these drugs affect unborn children by participating in the Antiepileptic Drug Pregnancy Registry, which is maintained by the Genetics and Teratology Unit of Massachusetts General Hospital (see section on Pregnancy and Motherhood). People with epilepsy that may be hereditary can aid research by participating in the Epilepsy Gene Discovery Project, which is supported by the Epilepsy Foundation. This project helps to educate people with epilepsy about new genetic research on the disorder and enlists families with hereditary epilepsy for participation in gene research. People who enroll in this project are asked to create a family tree showing which people in their family have or have had epilepsy. Researchers then examine this information to determine if the epilepsy is in fact hereditary, and they may invite participants to enroll in genetic research studies. In many cases, identifying the gene defect responsible for epilepsy in an individual family leads researchers to new clues about how epilepsy develops. It also can provide opportunities for early diagnosis and genetic screening of individuals in the family.

People with epilepsy can help researchers test new medications, surgical techniques, and other treatments by enrolling in clinical trials. Information on clinical trials can be obtained from the NINDS as well as many private pharmaceutical and biotech companies, universities, and other organizations. A person who wishes to participate in a clinical trial must ask his or her regular physician to refer him or her to the doctor in charge of that trial and to forward all necessary medical records. While experimental therapies may benefit those who participate in clinical trials, patients and their families should remember that all clinical trials also involve some risks. Therapies being tested in clinical trials may not work, and in some cases doctors may not yet be sure that the therapies are safe. Patients should be certain they understand the risks before agreeing to participate in a clinical trial.

Patients and their families also can help epilepsy research by donating their brain to a brain bank after death. Brain banks supply researchers with tissue they can use to study epilepsy and other disorders. Below are some brain banks that accept tissue from patients with epilepsy:

Brain and Tissue Bank for Developmental Disorders
University of Maryland
655 West Baltimore Street, Room 10-035 BRB
Baltimore, MD 21201-1559
(tissue from children only)

Brain and Tissue Bank for Developmental Disorders
University of Miami
Department of Pathology, R-5
Papanicolaou Building, Room 410
Miami, FL 33136
800-59BRAIN (592-7246)
(tissue from adults only)

Brain Endowment Bank
University of Miami
1501 NW Ninth Avenue, Suite #4013
Miami, FL 33136
800-UM-BRAIN (862-7246)

National Disease Research Interchange
8 Penn Center, 8th Floor
Philadelphia, PA 19103
800-222-NDRI (6374)

Human Brain and Spinal Fluid Resource Center
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Boulevard
Los Angeles, CA 90073
Page: 310-636-5199



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