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 fendstudy@georgetown.edu. 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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1. Do you have a child diagnosed with a pervasive developmental disorder? You may select more than one response.
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2. Did you take one or more of the medications listed below during pregnancy?
3. What was your total daily dose during pregnancy, on average, for each medication? If you only took this medication during one or two trimesters, please indicate the total daily dose for that period. You will have an opportunity to specify specific trimesters on a later question.
4. Please indicate the gestational and neonatal periods during which you took this medication. You may check as many boxes as are relevant. If you took more than one medication, please indicate this in the comment section.
5. Was the medication(s) prescribed for one or more of the following conditions?
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6. Has your child with an autism spectrum or other pervasive developmental disorder been evaluated with one or more of the following?
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7. In terms of diagnostic and therapeutic services, how far did you (or would you have to) travel to receive an evaluation?
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8. In the previous question, the survey asks how far you traveled to received diagnostic and/or treatment services for an autism spectrum or other developmental disorder. Please describe specific challenges, and indicate if you live in a region or state where such services are unavailable or limited.
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9. Approximately how long did your pregnancy last?
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10. Did you take folate supplements, or a multivitamin with folate, during pregnancy?
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11. Did you experience any of the following during pregnancy?
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12. What is the mother's hand preference?
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13. What is the father's hand preference?
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14. What is the hand preference of the person with an autism spectrum or other pervasive developmental disorder?
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15. What was your age when you gave birth to your child with ASD (mother)?
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16. What was your age when you gave birth to your child with ASD (father)?
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17. In this survey, your personal identity is unknown. We do not seek your mail address. We are interested in where you live, in a general geographic sense only.
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18. Did you breastfeed your child with ASD?
19. Is there anything else you would like to tell us regarding the topic of this survey?
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