[blindkid] ONH/SOD National Survey Study

Kim Cunningham kim at gulfimagesphoto.com
Fri Aug 26 19:26:57 UTC 2011

Forwarding to families who are interested....
Kim Cunningham

--- On Thu, 8/25/11, Garcia-Filion, Pamela <PGarciaFilion at chla.usc.edu> wrote:

From: Garcia-Filion, Pamela <PGarciaFilion at chla.usc.edu>
Subject: ONH/SOD National Survey Study
Date: Thursday, August 25, 2011, 5:57 PM

Dear Resource Providers,
Thank for your on-going support of The Vision Center’s “ONH/SOD Disease Distribution Study” at Children’s Hospital Los Angeles.  As a reminder, this is an on-going survey aimed at understanding the geographic distribution of ONH/SOD and the association with population and environmental factors.  
Attached you will find a survey packet to distribute to families.  Also, the ONH survey is available through an easy to remember web address – www.onhsurvey.org. Please continue to distribute this 6-question survey to your families with a child diagnosed with ONH/SOD.  
ONH/SOD continues to rise in prevalence, making this study an essential component to understanding the underlying prenatal causative factors.  We are excited to share findings from our first analysis of the geographic data. We identified a number of geographic areas with a high density of cases (note: these are not clusters).  Our subsequent studies will focus on these areas so that we may have a high enough number of cases to look more closely at the prenatal factors of mothers compared to other moms that didn’t have a child with ONH.  
The Vision Center at Children’s Hospital Los Angeles is committed to improving the lives of children with ONH/SOD through research - both clinical and epidemiologic.  Our program administrator has created a Facebook page; please feel free to visit it by searching for "optic nerve".  Also, attached is an article we recently submitted for the Envision Vision Rehabilitation newsletter (article on page 13).
If you have any questions about this survey or our ONH/SOD research program, please feel free to contact us at (323) 361-2267 [Cassandra Fink].
Thank you again for your support.  
Kind Regards,
Pamela Garcia-Filion, PhD, MPH
Research Associate
The Vision Center
Childrens Hospital Los Angeles

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