Autism Study- Need mothers of children with autism!

[Guest guest]

Invitation to Families – Autism Risk Assessment Survey

Dear Parents,

My name is Parth Desai, a Florida resident at St. Pete High. Many states are

grossly underrepresented in the studies and birth registries that track

childhood outcomes of prenatal exposure to medication and folate. For example,

regions such as the Midwest, Southeast, and Southwest have low representation

in the National Children's Study; the National Pregnancy Registry for Atypical

Antipsychotics; The North American Antiepileptic Drug Pregnancy Registry, and no

representation in the CHARGE Study of environmental exposures; the prospective

NEAD Study (Neurodevelopmental Effects of Antiepileptic Drugs); or the national

EARLI Study (Early Autism Risk Longitudinal Investigation).

This summer, I am working on this issue as an intern for the national

FEND-Folate Study sponsored by town 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. The FEND Study would like you to be our collaborator and

help us disseminate this online, national risk assessment survey:

http://www.surveymonkey.com/s.aspx?sm=qY4du_2bdtYao2HumBxcYjRA_3d_3d.

Would you please read the following information and forward the survey to

parents within your organization? Thank you for your cooperation! Please call

the principal investigator Dr. McVearry (202-687-4966 or

fendstudy@...) if you have any questions.

Knowledge Gap: Human Studies of Prenatal Exposure to Neuroactive Medications

and Folate

As a medication class, anticonvulsant drugs rank fifth among the most prescribed

drugs in the United States, with over 56 million prescriptions written in 2004

(IMS Health). Additionally, 48 million women of childbearing age took

antiepileptic drugs in survey year 2000, according to U.S. Census Bureau

statistics reported by Epilepsy Society of America. While several human studies

explicitly link autism and prenatal exposure to anticonvulsant medications, this

literature has three crucial limitations. First, human studies are primarily

limited to valproate exposures. Second, human studies are predominately based

on case report and retrospective enrollment methods, not prospective methods.

Finally, epidemiological data based on prenatal exposure are not currently

available for this medication class, and the population attributable risk (PAR)

for autism has not been investigated.

The Big Picture

Advances in autism diagnosis, treatment and FDA policy will be made more rapidly

if we understand autism not as an incurable disorder, but as a set of treatable

– and, in cases of chemical exposure, preventable – illnesses that have genetic

and environmental contributors. Understanding both genetic and environmental

causes of autism will help prevent autism from occurring in high-risk children

and offer treatments that target both the different symptoms and different

causes of autism spectrum and pervasive developmental disorders. Our goal is

both basic and ambitious: to have every parent who has a child with a

diagnosed, or suspected, autism spectrum or pervasive developmental disorder

take this 5-minute, anonymous online survey.

http://www.surveymonkey.com/s.aspx?sm=qY4du_2bdtYao2HumBxcYjRA_3d_3d.