FAQ FOR WOMEN
I am already several months pregnant. Can I still enroll in the Registry?
Yes, you can enroll in the Registry at any time during your pregnancy. Ideally, the Registry would like to enroll women before they reach the 16th week of their pregnancies, but we welcome you to enroll at any time during your pregnancy.
I am taking one of the drugs on your list, but I do not have epilepsy. Can I still enroll in the Registry?
Yes, if you are currently pregnant are taking AEDs for any reason you can enroll in the Registry. Please call (toll free) 1-888-233-2334 to enroll today!
am a participant in the AED Pregnancy Registry, but I’ve recently
moved. Can I still participate?
am pregnant but I am not taking one of the drugs on your list. Can I still
enroll in the Registry?
do I do if I have a question or a concern about participating in the Registry?
findings have you released/published?
The Registry does not provide any information about certain drugs until they are reviewed and released by the Scientific Advisory Committee. To read more about the methods and release criteria, click here.
Who are your sponsors? Does being sponsored by pharmaceutical companies present a conflict of interest?
The AED Pregnancy Registry is sponsored by Abbott, Eisai, Novartis, Ortho-McNeil, Pfizer and Sunovion. The Registry is proud to be conducting this research within a non-biased academic setting and goes to great lengths to insure that its research follows scientifically rigorous guidelines in regards to release criteria, anonymity and confidentiality. (For more details, please see our Methods section)
How many women enroll in the Registry per week?
Currently, approximately 10 women enroll each week.
Are you recruiting controls? How?
We are currently recruiting a control group for the Registry. We are asking Registry participants to ask their pregnant friends or family members (who are not taking AEDs) to enroll in our control group. For more information, please visit the control group section of our web site.
What does the Scientific Advisory Committee do?
The Scientific Advisory Committee is comprised of academic medical researchers with no financial interest in any pharmaceutical corporation. The committee meets twice each year to discuss the analysis of drugs being studied. The committee has final approval over the announcement and publication of registry data and conclusions.
What are your release criteria?
For information about our methods and release criteria, please click here.
Do you provide incentives for the study participant?
We do not provide incentives for most study participants. We do hold a raffle for women who have recruited a friend or family member to particpate as a member of our control group. The referring participant and the control group member each get an entry into the raffle.
How do you ensure confidentiality?
All data is stored in a database without mentioning names. Insurance companies, providers, and the pharmaceutical firms supporting the Registry DO NOT have access to any of this information.
What can you tell me about breastfeeding while taking AEDs?
Women can safely breast feed while taking AEDs. A term infant has been exposed to the AED for 9 months and can metabolize the medication as well as an adult, and there is generally less medication in the breast milk than in the mother's plasma. Please see page 1 of the Fall/Winter 2003 issue of our newsletter, and page 3 of the Spring/Summer 2004 issue for more information.
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FAQ FOR PRESS
When was the Registry started?
The North American AED (antiepileptic drug) Pregnancy Registry was established in 1997.
many women have enrolled?
are these women from?
many women with epilepsy are taking these medications?