If you are pregnant, and take antiepileptic drugs (AEDs), please call toll free (888) 233-2334 to register with the AED Pregnancy Registry. This registry is run by researchers at Massachusetts General Hospital and Harvard Medical School. 

What is the purpose of the Registry?

At present, we lack 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.

Who should participate in the Registry?

Women who are pregnant and taking AEDs for any reason.

When should I call the Registry?

As early in your pregnancy (1st trimester) as possible. If you are already in your 2nd or 3rd trimester, however, you can still participate in the Registry.

How do I register?

By calling toll free (888) 233-2334. Questions the Registry coordinator will ask you, as an example, are your age, the date of your last menstrual period, and what AEDs and vitamins you are taking.

Why should I participate in the Registry?

Because we need you! To quote a woman who recently enrolled, "You can't just find someone on the street who is pregnant and see if they'd be willing to take an AED, so that when you decide to have a baby you'll know the drug is safe and won't cause birth defects." By enrolling, you will help women in the future have the best chance of a healthy pregnancy and a healthy baby.

Will enrolling in the Registry take a lot of time?

Enrolling in the Registry takes very little time. Your initial phone call to the Registry will take less than 10 minutes. At seven months, there is another telephone interview, which will last approximately 5 minutes. After your baby is born, there will be a brief 5-minute follow-up interview.

What about confidentiality?

The researchers at Massachusetts General Hospital, Harvard Medical School, understand how important confidentiality is to you. A coding system is used and, therefore, your name and address, for example, are not part of the Registry database. No persons will be identified who have participated in the Registry.

What can I do right now to increase my chances of having a healthy baby?

Over 90 percent of women with epilepsy have healthy babies. The best thing you can do for your baby is to take good care of yourself - keep regular appointments with your doctor, take your seizure medication, and get proper amounts of food, sleep, and exercise. If at all possible, before you become pregnant, begin taking folic acid (0.4 mg. per day). Take prenatal vitamins with folic acid regularly throughout your pregnancy. Enrolling in the Registry will give you the satisfaction of knowing that you are helping women have an easier time in the future.

When will we know more about pregnancy and AEDs?

Unfortunately, research can take many months - even years. The more women like you who choose to enroll in the Registry, the sooner we may have the answers.

Antiepileptic Drug (AED) Pregnancy Registry (888) 233-2334

 

Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 3/2014
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