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.