Something to add to my wish list
The eating disorder world really needs something like this. On NPR, I read about a new website serving the autism community, known as the Interactive Autism Network (IAN). This website links researchers studying autism with the sufferers and their families who so desperately need treatment and answers.
Like so many conditions, autism research is hobbled not just by lack of funding but also by a lack of participants in research studies. Without enough participants, studies can't go forward. So two years ago, the Kennedy Krieger Institute in Baltimore partnered with Autism Speaks to create IAN, a research oriented website that contains a database with information on sufferers and their families. And families can mark interest in particular studies, whether online or in person.
And so far the database is paying off. It's helping find participants for a current genetics study based in Chicago by locating people in the surrounding area, resulting in more than 30 families signing up. What's more:
The vast database helped reveal a link between depression in mothers and autism in their children. Researchers had known about high rates of depression among these moms, but thought it might have been a reaction to their child's problems.
But information from IAN showed that "more than half the mothers were diagnosed with depression before they ever had the child with autism," Paul Law, of the Kennedy Krieger Institute and who runs the network, says. That suggests some of the same genes may be involved in both problems.
Brain researcher Helen Tager-Flusberg says it's one of the quickest ways for a researcher to find study participants. "IAN plays this wonderful role of facilitating the connection between researchers and families," she says.Would it be great if some of the large ED clearinghouse websites had such a database? Where parents and sufferers could go and provide information* and help further research and get better care and treatment?
I'm adding that to my wish list.
*Obviously, proper security is a must, and only researchers with the proper credentials and approvals should be able to access the information.
6 comments:
I just chatted with one of the founders of this website, http://www.healogica.com/, a couple of weeks ago. They'll be starting with diabetes clinical trials, but the plan is to expand. I don't know if they're planning to add mental health research, but he and I talked about behavioral health research specific to diabetes so I wouldn't be surprised if they planned to incorporate MH. I'll be in contact with them once they launch, so maybe I'll ask about it.
What an outstanding idea. Sign me up!
Brilliant idea. I'll have to show this post to my DH who has suffered from Type 1 Diabetes for more then 25 years (he is 46). I would love it for myself as well from the ED standpoint.
Autism speaks isn't liked by many of the people in the autism community, as the focus on the needs of perents of autistic children, the search for a cure and removal of autism from society, rather than the acceptance of neuro diversity.
Some links.
http://thecurvature.com/2009/04/06/things-that-pain-me/
http://aspergersquare8.blogspot.com/2009/04/autism-awareness.html
What a terrific idea!
Second that, Carrie, a similar model for EDs would be super-duper!
It was great for me to hear Helen Tager-Flusberg's voice again; she was my psych and honors advisor as an undergrad. At the time she was doing very neat experiments to attempt to further elicit the specif processing differences between children with autism, Down's syndrome, and cognitively typical children.
@rhydwyn, I hear what you're saying! For other readers who may not be aware of this, there is a movement in the autism/asperger community that seeks to gain acceptance for people with these neurological characteristics within society, exactly as they are - hence Neuro-diversity. There's a wonderful blog post from a person with asperger at shakesville here:
http://shakespearessister.blogspot.com/2009/04/soaking-in-normalcy-fetishism-or.html
She explains this better than I can from the POV of within.
Anyway, it seems to me that what is really needed and helpful both for people with autism/asperger - or EDs - and for the people that love them, work with them, and treat them, is a more complete understanding of the conditions than we currently have. Good clinical and epidemiological research is needed to achieve this. The ultimate goal should be to enable people within AND outside these communities to have better choices than are currently available. That seems to me to be a common ground we could all be working towards.
I am not necessarily intending this post to be an endorsement for the group "Autism Speaks." My cousin has autism, and I am well aware of all of the bogus, non-scientific "treatments" out there, none of which have been validated by randomized controlled trials.
Still, this website seems like such a great idea.
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