Pregnancy Registry Still Seeks Enrollees: Important to Pregnant Women Now, In Future

By Regina Reid
between us staff
Posted: February 28, 2003

Six years ago, a group of scientists joined to develop a national registry that would provide information about the safety of antiepileptic drugs in pregnancy. The Antiepileptic Drug (AED) Pregnancy Registry is still going strong today - as of last fall, close to 3,000 women were registered - but the program needs the continued participation of women who are taking AEDs while pregnant.

Why the Registry is Important

At present, the medical community lacks information about the relative safety of specific antiepileptic drugs (AEDs) during pregnancy. Medications are often avoided by pregnant women, but without medication, women with epilepsy are at risk of seizures. The AED Pregnancy Registry 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 Call and When

Women who are pregnant and taking AEDs for any reason should call as early in the first trimester of pregnancy as possible. If you are already in your second or third trimester, however, you can still call and participate in the registry.

Enrolling in the registry takes very little time. Your initial phone call will take less than 10 minutes. Questions the registry coordinator will ask you, for example, are your age, the date of your last menstrual period, and what AEDs and vitamins you are taking.

At seven months, there is another telephone interview, which will last approximately five minutes. You will be asked about the status of your pregnancy (have you suffered a miscarriage or otherwise decided to terminate your pregnancy?) and if you've undergone any testing (ultrasound, for example). The interviewer will also inquire about any changes to your medication use and about your general health practices.

After your baby is born, there will be a slightly longer follow-up interview to collect information about the outcome of your pregnancy and the health of your newborn.

Strict Confidentiality

The researchers at Massachusetts General Hospital, Harvard Medical School, understand the importance of confidentiality. A coding system is used and, therefore, your name and address, for example, are not part of the registry database. No one who participates in the registry will be identified.

If you are pregnant, and take antiepileptic drugs, please call toll-free (888) 233-2334 to register with the AED Pregnancy Registry.