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Autism Research Database Cuts Cost, Connects Patients

Cynthia Johnson, for HealthLeaders Media, November 3, 2010

IAN helps researchers at the center quickly collect data from appropriate participants, enabling the researchers to integrate that information with the core data in the center's database, says Farmer.

IAN is a "phenomenal resource" and the participant recruitment process would be much slower without the network's involvement, Farmer says. Even though the Thompson Center has a large number of patients who are enthusiastic about participating in research studies, the center is often unable to enlist them as quickly.

"We're being legitimized as a powerful form of research that may replace more conventional ways of doing things," says Kiely Law.

Recruiting participants for autism studies is difficult because patients often don't receive treatment in traditional medical settings. A child may be diagnosed at a center that specializes in ASDs; however, most of the interventions the child is likely to receive will occur at school or at home. As a result, researchers don't have a direct line to families.

The Thompson Center is using its findings to provide information to fellow researchers and state workers who have the potential to make changes in how services are organized and delivered. It is furthering its own research while helping to craft a policy agenda for the state.

The Thompson Center, the University of Missouri, and the Missouri State Department of Developmental Disabilities partnered with IAN to develop a feature on IAN's website called State Stats.

The state of Missouri was interested in having an autism registry, so the Thompson Center worked with IAN to extract the people from Missouri who registered with the network.

Farmer says this tool enables her to download specific information about individuals from Missouri. Based on the tool's success there, the IAN project extracted the same information for all 50 states.

Site users and researchers are now able to click on any state in the nation to learn more about the characteristics of the people in that state who are affected by autism and have enrolled in IAN.

"Our policymakers at the state level pull information from IAN's State Stats as they talk about policy decisions for the state," says Farmer. "There's an initiative here in Missouri to get as many people as possible to enroll in IAN so it can be an even richer source of data."

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