[blindkid] ONH/SOD National Survey Study

[Kim Cunningham]

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
To: 
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
 
Pamela Garcia-Filion, PhD, MPH
Research Associate
The Vision Center
Childrens Hospital Los Angeles
www.thevisioncenteratchla.org
 
 

---------------------------------------------------------------------
CONFIDENTIALITY NOTICE: This e-mail message, including any attachments, 
is for the sole use of the intended recipient(s) and may contain confidential
or legally privileged information. Any unauthorized review, use, disclosure
or distribution is prohibited. If you are not the intended recipient, please
contact the sender by reply e-mail and destroy all copies of this original message. 
---------------------------------------------------------------------
-------------- next part --------------
A non-text attachment was scrubbed...
Name: Survey packet_2011.pdf
Type: application/octet-stream
Size: 326906 bytes
Desc: Survey packet_2011.pdf
URL: <http://nfbnet.org/pipermail/blindkid_nfbnet.org/attachments/20110826/0361234f/attachment.obj>
-------------- next part --------------
A non-text attachment was scrubbed...
Name: Service Provider Cvr Ltr 2011.pdf
Type: application/octet-stream
Size: 57112 bytes
Desc: Service Provider Cvr Ltr 2011.pdf
URL: <http://nfbnet.org/pipermail/blindkid_nfbnet.org/attachments/20110826/0361234f/attachment-0001.obj>