Cyber Scout Puts Autism Studies On Faster Track One of the big challenges for researchers studying autism is finding enough people to participate in studies. Recruiting can delay projects by months — even years. But a growing cyber network is putting families in touch with researchers and clearing the way to interesting discoveries.
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Cyber Scout Puts Autism Studies On Faster Track

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Cyber Scout Puts Autism Studies On Faster Track

Cyber Scout Puts Autism Studies On Faster Track

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Research on autism often gets bogged down for a surprising reason. Scientists can't find enough people with autism to participate in their studies. So projects can get delayed for months or years. But these days, researchers are getting help from a friend in cyberspace. It's an unusual Web site named IAN. NPR's Jon Hamilton reports.

JON HAMILTON: IAN's full name is the Interactive Autism Network. It was created two years ago by a top-flight research center, the Kennedy Krieger Institute in Baltimore, with funding from Autism Speaks, an advocacy group. And IAN is proving to be a huge help to researchers like Jackie Klaver. Klaver is the project coordinator for a study on autism and genetics at the University of Illinois at Chicago.

A lot of studies only need a few dozen volunteers. Not this one.

Ms. JACKIE KLAVER (Project Coordinator): This particular study we're looking for 750 trios, which includes a mother, a father and an affected child.

HAMILTON: That's 2,250 people total. Oh, and they have to live within 100 miles of Chicago, and the children will need to make repeated visits for blood tests, MRI scans and treatment.

Klaver says recruiting was pretty slow until IAN sent an e-mail appeal to every family in the database that appeared to meet the study's criteria.

Ms. KLAVER: I was flooded with calls and e-mails. We probably received 30 contacts in probably less than 48 hours.

HAMILTON: And Klaver says the calls keep coming. More than 100 research projects have used the IAN database so far. The secret to IAN's success is its size. Paul Law of the Kennedy Krieger Institute directs the project.

Dr. PAUL LAW (Kennedy Krieger Institute): Well, since our launch on April the 2nd of 2007, we have grown to 30,000 participants.

HAMILTON: That represents about 10,000 families with at least one child with autism. And this month, IAN begins accepting enrollments from adults with autism. When people register, they fill out an extensive questionnaire that goes into the database. And they get notified about studies they might want to sign up for.

The database also provides a wealth of information for researchers to sift through. And they've already found some interesting stuff. For example, researchers knew that children with autism had mothers with high rates of depression. But they didn't know if depression was simply the mom's reaction to their situation. Law says IAN's database added a valuable piece of information.

Dr. LAW: More than half of the mothers actually were diagnosed with depression before they ever had the child with autism.

HAMILTON: Of course, a database that relies on self-reported information is less reliable than actual scientific observations and tests. But Helen Tager-Flusberg of Boston University says that's a trade-off many scientists are willing to make. She's used the database to help understand rates of anxiety and depression among adults with autism.

Dr. HELEN TAGER-FLUSBERG (Boston University): When you look at the published studies where people have directly assessed this, you see wildly varying estimates.

HAMILTON: Tager-Flusberg wanted to know why.

Dr. TAGER-FLUSBERG: Interestingly, anxiety and depression were found in the IAN database to be higher. Those rates are higher in people with Asperger's syndrome.

HAMILTON: And lower in people with more severe autism. Tager-Flusberg says there's no other way for scientists to reach so many families so quickly. And IAN's importance is likely to increase. Part of the administration's economic stimulus package is putting more money into autism research.

Jon Hamilton, NPR News.

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