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autism research-need mothers of children with autism!

Posted by: " dynamite354 " dynamite354@... dynamite354

Sun Aug 23, 2009 4:59 pm (PDT)

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.