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Accelerating autism research through the Interactive Autism Network

Paul Law, M.D., M.P.H.
Kennedy Krieger Institute

The use of Internet-mediated research to study medical and healthcare issues is gaining significant traction and validation. The Interactive Autism Network (IAN), led by medical informatics expert Paul Law, has spearheaded this movement in autism research, creating unique opportunities for researchers.

Since 2007, IAN has engaged more than 38,000 participants in its innovative research. These participants include more than 14,000 children and 800 adults with autism spectrum disorders, 9,000 siblings and more than 7,000 parents or legally authorized representatives. They have participated in a complex self-report protocol consisting of baseline questionnaires, standardized instruments and one-time surveys.

The data set that IAN has collected, along with the generous involvement of the IAN families, has enabled IAN to provide much-needed subject recruitment assistance to more than 300 autism research projects. In addition, it has enabled IAN investigators, collaborators and independent researchers to publish on a variety of topics ranging from population genetics to twin studies and the stability of diagnosis.

IAN is working with the Simons Foundation to become an even more important resource for autism researchers and the autism community by improving its research protocol, its support for researchers and its educational outreach activities. In addition, IAN is engaging the Simons Simplex families in a long-term research endeavor through the Simons Simplex Community @ Interactive Autism Network ([email protected]). The [email protected] will enable researchers to collect data from this well-characterized cohort and contact them for participation in follow-up and other studies.

Law has been involved in improving the research infrastructure for autism spectrum disorders since 1996. In addition to IAN, he developed ISAAC, the Internet System for Assessing Autistic Children, a web-based application for administering and managing health research studies.

proposalCENTRAL #219435