Interactive Autism Network
Tags:From: HealthDay
Robert Preidt
Tuesday, April 3, 2007
TUESDAY, April 3 (HealthDay News) -- Experts say they've launched the first U.S. national online autism registry.
The Interactive Autism Network (IAN), which began on Monday, will link parents of children with autism with researchers in an effort to learn more about the causes, treatments and possible cures for autism.
The network will collect valuable genealogical, environmental and treatment data from parents and will inform parents about local and national research studies. Many autism studies cannot be completed because researchers aren't able to enroll enough qualified participants.
"Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure," Dr. Paul Law, director of IAN, said in a prepared statement. "IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it."
The network's data collection and management processes are designed to ensure privacy.
"By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukemia community," Dr. Gary Goldstein, president and CEO of the Kennedy Krieger Institute, which launched the network, said in a prepared statement.
"Thirty years ago, the majority of children with leukemia died. Today, the majority survive, because increased participation by a very organized research community led to discoveries of new and better treatments," Goldstein said.
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There was a story about this on NPR this morning and then my friend Marianne sent me a follow-up as well - thanks for the reminder that I wanted to check this out.
This is so cool.
A place for people to come together, share information & experiences, plus give & get support. A way to link parents and researchers. It looks like there is tons of interesting stuff on there...always thirsty for more information.
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32 comments
Ali -- Just wanted to let you know that Friday, April 6th, segment of The View is on Autism and Autism Speaks.
Stephanie
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thanks for sharing this. We are definately planning to get Madison registered...
xoxo
M
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I just watched the rerun of "The View"'s special on autism and just wanted to tell you that I am thinking of you and all the parents out their whose children have autism. I am not personally affected, but feel the need to reach out. Thank you Ali for making me aware of the epidemic. With all the resources you have listed here, I am planning on doing something starting with my donation to Autism Speaks.
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I also just saw the segment of "The View". Normally I don't watch it for other reasons that I won't go into. But I did today. It was great to hear the stories.
Happy Easter!
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Just rereading comments - I have a child on the spectrum and a child with SID. Somethings are incredibly similar, but some are way apart. I'm still trying to figure the SID/SPD thing out - since it has been a whopping 3 weeks since we got that one! So, research away!!
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Have you seen this?
http://www.whatkindofworlddoyouwant.com/videos/view/id/213154
Five for Fighting video featuring children with autism and Autism Speaks
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Ali
I'm an avid, avid fan of your SB stuff and I thank you.
Quietly at home, I sit and read all this stuff re: ASD and, although my DH won't necessarily agree/acknowledge our eldest twin DS's behaviours etc, I particularly have found great solace and improvement in using the techniques used in the treatments for PDD.
I'm a Mental Health Nurse as well and the info you've been able to lead me to has had a beneficial effect on, not only private, but my professional life.People now take me seriously when I talk about these things and how they impact on lives, not only of the 'person-with-difficulties'.
Thank you. As a fan, a mum and a nurse. Thank you.
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HUGE VICTORY!! So glad to read this. I worked for 3 year as a speech therapist in the public schools and so often parents would ask about just this sort of thing. I'd give them names of other professionals, other parents of children, univ. in the area with depts. that might help, local/ state orgs. that might help but always with a sigh would shake my head about the sort of list they craved. SO HAPPY to hear that is finally getting done. Congratulations to you and other parents. What a huge step forward.
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I like your post about Interactive Autism I find very important to have knowledge of that.Brian N. Giddens
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I needed to know more about this sick to understand a my cousin and can understand his situation.
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