Wednesday, July 25, 2012

FEND-Folate Survey

risk assessment survey (Fetal Exposure to Neuroactive Drugs and Folate).

"Enjoying the Hi-5s of Autism - A Family Experience" shared a link via Georgetown University FEND-Folate Autism Research.
Georgetown University FEND-Folate Autism Research -
Dear Parents,
We would greatly appreciate your participation in the national FEND-Folate Study sponsored by Georgetown University Medical Center (IRB # 2009-162). “FEND” stands for Fetal Exposure to Neuroactive Drugs. Please help us expand awareness and accelerate understanding of fetal exposure to neuroactive medications and folate by participating in this 5-minute, anonymous and encrypted survey:
Would you please read the additional information on our page and forward the survey to parents within your organization? Thank you for your cooperation!

FEND-Folate Survey

1. Introduction

Dear Parent,

Thank you for participating in the FEND-Folate risk assessment survey (Fetal Exposure to Neuroactive Drugs and Folate). This survey takes about 5 minutes to complete, and provides critical information about prenatal medication exposure patterns, as well as prenatal folate supplementation patterns.

If you have a child with a diagnosed or suspected pervasive developmental disorder, including any diagnosis on the autism spectrum, please participate.

The impetus for the FEND-Folate survey is an unexpected observation that emerged in the course of a well-controlled, prospective study of children born to women who were taking an antiepileptic drug (AED) during pregnancy to manage seizures. The original goal of this study was to track child development -- with an emphasis on cognitive deficits -- in children who were exposed during pregnancy to 1 of 4 medications. These medications included valproate (Depakote and Depacon), carbamazepine (Tegretol), lamotrigine (Lamictal), or phenytoin (Dilantin). Surprisingly, in a sample of children in this study, autism spectrum cases greatly exceeded the autism spectrum outcomes reported in the general population.

With your help, we hope to examine this outcome in a much larger population of mothers and children. In this survey, we have expanded the number of medications to 23 neuroactive "AED" medications, and it is our great hope to include individuals from regions that are under-represented in autism studies.

Why is this an important goal? As a medication class, anticonvulsant drugs represent the fifth most-prescribed medication in the United States. These drugs are also called "AEDs" for "antiepileptic drugs." Please note that these medications are used to manage far more than epilepsy. In fact, they are most frequently used to manage migraine, and are increasingly used to manage mood, anxiety and pain. In other words, the name of this medication class can be misleading. So, when you begin the survey, please read the entire list of medications: it is easy to overlook a relevant antiepileptic medication if, during pregnancy, you were not under clinical care for epilepsy.

Your participation in this survey is anonymous; we do not receive any data that reveal your personal identification information. If you have any questions, please contact Dr. Kelly McVearry at Georgetown University Medical Center (202-687-4966), which is a password-protected landline that only Dr.McVearry may access. If you choose to contact Dr. McVearry, your identity will be revealed to her alone; this will not link your identity to your survey responses.

After participating in this survey, if you would like to be contacted to participate in a more comprehensive study, please call 202-687-4966 or email Both the phone number and the email are password-protected and cannot be accessed by anyone except for the principal investigator of this survey. These studies may include cognitive testing, home visits, and saliva collection.

Thank you! The FEND-ASD survey receives institutional support from Georgetown University Medical Center (IRB approval 2009-162) and is approved by the Interactive Autism Network (approval SR00139) at the Johns Hopkins Kennedy Krieger Institute.

With great appreciation,

The FEND Study
Georgetown University Medical Center
CFMI - LM 14
3900 Reservoir Road, NW
Washington, DC 20016

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