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Autism Research Database Cuts Cost, Connects Patients

Cynthia Johnson, for HealthLeaders Media, November 3, 2010

The increasing number of children diagnosed with autism—an estimated one in 110 in the
United States—is pressuring researchers to accelerate the pace of their discoveries. Often, locating qualified study participants is researchers' biggest barrier and takes the biggest bite out of their budget.

In response to this growing need, the Kennedy Krieger Institute of Baltimore has developed the
Interactive Autism Network (IAN), the nation's largest online autism researchstudy. The initiative connects people affected byautism with researchers who are in need of studyparticipants.

The 33,000 people who have already joined the network contribute to the IAN database by providing information on their diagnosis, family background, home environment, and services received in order to help researchers better understand autism spectrum disorders (ASD) so they can learn more about its causes, diagnosis, and treatments.

"The main goal of the project is to accelerate the pace of autism research by connecting families and researchers," says Kiely Law, MD, MPH, research director at the IAN project. "In autism, as well as in other disease entropies, one of the biggest problems that researchers have is recruiting people for studies. It's estimated that approximately 80% of studies either fail or are significantly delayed because of difficulties recruiting families or appropriate volunteers."

IAN also helps researchers and influences policymakers. Over 280 research projects are currently using IAN to recruit study participants. "That is a very large percentage of the market share of projects in this country," says Paul Law, MD, MPH, director of informatics at the Kennedy Krieger Institute. "We don't even advertise because we can't handle
all of the activity."

The Thompson Center for Autism and Neurodevelopmental Disorders at the University of Maryland uses IAN for its research projects. The center received a state-implemented federal grant to improve comprehensive and coordinated care for children with autism and other developmental disabilities. Part of that grant involves understanding service delivery programs and gaps in care.

To learn more, the center created a health survey that asked questions regarding access to care and sent it to all Missouri citizens enrolled in IAN. This process enabled the center to recruit close to 400 research participants during a three-month period.

"IAN provides us with easy access to participants," says Janet Farmer, PhD, director of academic programs at the Thompson Center. "In addition to the information that we quickly got on our survey, we can now connect that to the data that families have provided about their child and family in the IAN database. We can use that in a very unique way to look at the issues for individuals at different ages in terms of access to care."

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