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Old 08-20-2016, 03:43 PM
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Jeff Shaddix Jeff Shaddix is offline
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Join Date: Jul 2008
Location: Houston, TX
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Hi Barney,

Sorry for the delay in replying. The forum certainly doesn't see as much use these days as it did in years past, due to the increase in popularity of social media sites like Facebook. However, we do still collect information via the registry, and I provide this information to researchers, such as Dr. Jaclyn Biegel at Children's Hospital of Philadelphia. Information obtained via the registry is never shared with anyone for commercial purposes or with anyone who does not have a direct research-related need for the data, so you can rest assured your data will remain safe.

Take care,
Jeff Shaddix
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