About AED Pregnancy Registries

The following material is excerpted from the Epilepsy Foundation's Women and Epilepsy Initiative.

At present, there is not sufficient information about the relative safety of specific antiepileptic drugs (AEDs) during pregnancy. Medications are generally avoided by pregnant women, but without medication, women with epilepsy are at risk of seizures. The Registry, as its name implies, registers or enrolls women (over the telephone) who are pregnant and taking AEDs to find the answers. As more women register and report the outcome of their pregnancy, the researchers at Massachusetts General Hospital, Harvard Medical School, will be able to identify the safest AEDs for seizures during pregnancy and also determine how safe the newer AEDs are.

Women who are pregnant and taking AEDs for any reason should participate in the Registry. They should call as early in their pregnancy (first trimester) as possible. Those who are already in their second or third trimester, however, can still participate in the Registry. Interested parties may call (888) 233-2334, whereupon the Registry coordinator will ask questions about the woman's age, the date of her last menstrual period and what AEDs and vitamins she is taking, among others.

Enrolling takes very little time and is confidential. The initial phone call to the Registry takes fewer than ten minutes. At seven months, there is another telephone interview, which lasts approximately five minutes, followed by a brief five-minute postnatal interview. Each record is coded, so that no personal identifying information is part of the database.

Over 90 percent of women with epilepsy have healthy babies. The best thing individuals can do is to take good care of themselves by keeping regular doctor appointments, taking seizure medication and getting proper amounts of food, sleep, and exercise. If at all possible, women should take folic acid (0.4 mg. per day) prior to becoming pregnant and should take prenatal vitamins with folic acid regularly throughout pregnancy.

When women taking AEDs enroll in the Registry, they have the satisfaction of knowing that they are helping women have an easier time in the future with healthy pregnancies and healthy babies. Higher enrollment numbers can accelerate the research process.

More Information

• Pregnancy Registry Still Seeks Enrollees: Important to Pregnant Women Now, In Future
  Posted: February 28, 2003
• Pregnancy Registry Reports Drug Risk to Fetus
  Posted: February 28, 2003