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TOPICS ON THIS PAGE: Introduction | How you can help | Medications | What you need to do | Confidentiality | Controls | FORMS | Questions?

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The AED Pregnancy Registry
- The Massachusetts General Hospital

121 Innerbelt Road ~ Room 220 ~ Somerville, MA ~ 02143 ~ Toll Free: 888-233-2334
Sponsored by: AbbVie, Eisai, Novartis, Ortho-McNeil, Pfizer, Sunovion, UCB
INFORMATION FOR WOMEN

INTRODUCTION TO THE REGISTRY


There are many women like you who are of childbearing age and take one or more antiepileptic drugs, also known as anticonvulsants. These medications are used to treat epilepsy or other conditions such as pain or mood disorders. Doctors are learning more and more each day about these medications, but there is still much work to be done. Doctors need more information so they can make the right decisions for mother and baby when treating women during pregnancy. The Registry is collecting this information to help find the answers. Every pregnant woman who enrolls with the Registry brings the knowledge one step closer. It's easy to participate - just 3 phone calls - and EVERY woman who enrolls counts!

As of April 2014, there are over 9,300 women enrolled in the Pregnancy Registry. All of these women want to help find the answers. We hope you will too! By enrolling as many pregnant women as possible, the Registry will be able to give doctors a clearer picture of which medications are safest for babies' health.

By enrolling in the Registry and sharing your experiences, you will be contributing to a brighter future for mothers and babies. Researchers will be able to find more answers to the question so many women have; " Is this medicine safe for my baby?" Your willingness to help the expectant mothers of tomorrow is greatly appreciated.

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HOW YOU CAN HELP


If you are pregnant and are currently taking any of the following medications for any reason, you can enroll in the Registry by calling TOLL FREE 1-888-233-2334. Enrollment is open to women at any stage of pregnancy, but not after the infant's birth. 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.

If you are pregnant and are NOT currently taking any of the following medications, you can enroll in the Registry as a CONTROL participant by calling TOLL FREE 1-888-233-2334. Please see INFORMATION FOR CONTROLS (below) for more information.

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MEDICATIONS BEING STUDIED

Ativan® (lorazepam) Neurontin® (gabapentin)
Banzel® (rufinamide) Onfi® (clobazam)
Carbatrol® (carbamazepine) Peganone® (ethotoin)
Celontin® (methsuximide)
phenobarbital (generic)
Depakene® (valproic acid) Phenytek® (phenytoin)
Depakote® & Depakote ER   (divalproex sodium) Potiga® (ezogabine)
Diamox® (acetazolamide) Sabril® (vigabatrin)
Dilantin® (phenytoin) Seconal Sodium ® (secobarbital)
Epitol® (carbamazepine) Serax® (oxazepam)
Felbatol® (felbamate) Stedesa® (eslicarbazepine acetate)
Frisium® (clobazam) Tegretol® (carbamazepine)
Gabitril® (tiagabine) Topamax® (topiramate)
Keppra®/Keppra XR® (levetiracetam) Tranxene® (clorazepate dipotassium)
Klonopin® (clonazepam) Trileptal® (oxcarbazepine)
Lamictal®/Lamictal XR® (lamotrigine) Valium® (diazepam)
Lyrica® (pregabalin) Vimpat® (lacosamide)
Mebaral® (mephobarbital) Xanax® (alprazolam)
Mesantoin® (mephenytoin) Zarontin® (ethosuximide)
Mysoline® (primidone) Zonegran® (zonisamide)

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WHAT YOU NEED TO DO


It's easy … there are only 3 telephone interviews:

1. Call TOLL FREE 1-888-233-2334 as soon as possible after you learn you are pregnant (20 minute phone call)

2. The Registry will call you when you are 7 months pregnant to see how you are doing (5 minute phone call)

3. The Registry will contact you again after your baby is born (5 minute phone call)

Because the Registry will be calling you to conduct these interviews, it is very important that you keep us informed if any of your contact information changes while you are participating in the Registry. If you change your phone number or address, please call us TOLL FREE 1-888-233-2334 to let us know how to reach you!

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YOUR IDENTITY WILL REMAIN CONFIDENTIAL


It is very important that you feel comfortable when enrolling in the Registry; therefore, all findings will be filed in a database without mentioning names. Insurance companies, your doctors, and the pharmaceutical firms supporting the Registry DO NOT have access to any of this information. We truly appreciate your interest in helping other women and their babies in the future.

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INFORMATION FOR CONTROLS


What is a "control group"?

A control group can also be called a comparison group. The Registry needs a group of women who are pregnant and are NOT taking anticonvulsant drugs to compare to our group of women who are taking anticonvulsant drugs. This will help us to gather the most accurate data possible for our study.

Who is eligible to participate?

Any woman who is currently pregnant and is NOT taking anticonvulsant medication of any kind is eligible to be a control for the Registry. A control can enroll at any time during pregnancy, but the earlier she enrolls the better!

What do I have to do to participate as a control?

First you should call the Registry TOLL FREE at 1-888-233-2334 to enroll as a control. After you have enrolled, the Registry will take care of the rest! We will call you for 3 quick telephone interviews (two during your pregancy, and one after delivery) that last no more than 10 minutes each. That's it! It's easy and takes very little of your time.

Do I get anything for participating as a control?

Yes. We'd like to thank you for participating as a control by entering you in a raffle drawing for a great prize! If you are chosen as the lucky winner you'll get:

A $400 American Express Gift Card!

The gift card can be used at over a million different businesses in the United States where American Express Cards are accepted. Use it for meals and entertainment, or to purchase items from catalogs, online vendors, or at your favorite store!

The next drawing will take place in May, so be sure to call TOLL FREE 1-888-233-2334 today to enroll as a control.

Got Friends?

Tell all your friends about becoming a control! Once you enroll as a control, you'll receive an additional entry in the drawing for each friend who also enrolls as a control! The more of your friends who join in, the more chances you get to win! So call or send out an email to all of your pregnant friends and family across the country and tell them to contact the Registry TOLL FREE at 1-888-233-2334. Make sure you give them the link to this page so they can learn all about the Registry, being a control, and the great prize!

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FORMS

The forms in this section are .pdf documents. If you do not already have Adobe® Reader®, you can easily download it for free by clicking on this logo:




Neurologic Forms and Instructions

Obstetric Forms and Instructions

Pediatric Forms and Instructions

Psychiatric Forms and Instructions



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QUESTIONS?

Still have questions about the Registry? Please vist our Frequently Asked Questions page, or feel free to contact us.

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FOR WOMEN
-Introduction
-How you can help
-Medications being studied
-What you need to do
-Confidentiality
-Information for Controls
-FORMS
-Questions?
FOR PROVIDERS
F.A.Q.
CONTACT US
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