AED Pregnancy Registry

[KAM]

I have been involved with the study of Neurontin since the birth of my twins. They are asking me for a medical release of all of my neurology records as well as all of the pediatric records for my kids. Has anyone ever done this?

 

[Bernard]

Their about page describing the methods only mentions 3 interviews. It doesn't mention anything about surrendering medical records.

What do I do if I have a question or a concern about participating in the Registry?
Please call us with questions any time. We are more than happy to talk to you about participating in the Registry. Call us at (toll free) 1-888-233-2334.

AED Pregnancy Registry FAQ

 

[KAM]

I've already done the phone interviews and filled out many questionnaires over the past seven years. This was the first letter that I received on allowing them access to my medical records. The letter says, "Your participation has been a tremendous help in our efforts to determine which anticonvulsants are safest to use during pregnancy. Remember, we keep all of your personal information completely confidential. Our files are stored in a secure research office. No insurance company has access to any personal information we obtain." I would love to be able to help them on the research because when I was pregnant; being on any AED was a big concern. I am curious how others would feel about releasing their records.

 

[RobinN]

I see the positives here and not the negatives.
I personally would allow it, but then again my mind does not go down the dark side. Scarier these days giving out your credit card number and license for fear of identity theft, but we do it willingly.

Perhaps ask how they store the information, what safety precautions are used.
Without patient information though, moms will only have the drug companies research.

You are wise to think this through.

 

[KAM]

It is a tough call. Hopefully someone may take a look at this thread that has actually participated in one. I will give them a call to see the specific info they are trying to collect rather than releasing everything.

 

[brain]

They never asked me for the records, but of
course that was a long time ago; maybe they
have new regulations now. There's been a lot
of changes and regulations unlike it was in the
past. So when in doubt, call them up and inquire
again, and hang up and call them back up and
get someone else and ask again - if you get
3 out of 3 people - then most likely the regulations
have changed and the website just hadn't been
updated.

You can always ask or request a brochure or
a US Government Info to be mailed to you with
specifics. It's free and they will be more than
happy to mail you the information for you to
review it.

 

[KAM]

Good idea, I'll let you know what I come up with.

 

[Loudmouth]

I would like to share any knowledge that comes from my current pregnancy (my first since my diagnosis). How do I go about this in the UK, as I am 15 weeks pregnant and taking 1200mg/day gabapentin (neurontin in US). When my obstetric consultant asked the british drug registry (or whatever it's called), they only seemed to have the details of 13 pregnancies where gabpentin/neurontin was involved. 6 of these ended in an elective termination (no reasons given), 4 ended in miscarriage, and of the ones that were left, 3 had minor birth defects, but the mother of one was also taking sodium valproate, and one had a major defect (unstated). I'm quite sure that any additional data from my pregnancy would help others facing the same choices and problems as I am in the future, as I would have no problems sharing ALL information. I just don't know how to go about it, as I am without a neuro AGAIN due to my health authority refusing to pay to send me to the one I was seeing 60 miles away and there being no epilepsy specialists in my health authority...

 

[alivenwell]

I was pregnant with medications also and my son turned out normal. I was told by my neurologist that the seizures rather than medications can be more damaging to a fetus. It's critical that you take the meds. Also, as my pregnancy progressed, I had to increase the amount of medication. I was on phenobarbital only. They immediately took me off dilantin as soon as the pregnancy was known. Mysoline was a consideration, but its side effects on the unborn were unknown at that time.

 

[stilldancing_98]

I was on Depakote and it was the worst for birth defects. I had several seizures, TCs as I gained weight they had to give me more. Same epileptologist as I have now. They wanted me to take a test while I was pregnant about my meds and all. That was 10 almost 11 years ago. He had withdrawls from depakote, reflux in his right kidney, delayed, now we think he has a small liver and scoliosis.He has a tough life.I love my son.

 

[epileric]

I would check the release if it says anything about them maintaining your privacy or to whom your file may or may not be released to.

 

[stilldancing_98]

You know, I don't remember. I just remember my dr. being really intense on it. It was for Meds and pregnancy. I don't think it was going to any body I didn't want it to.It was at Harborview in Seattle.