Pediatric Informatics: Computer Applications in Child Health (Health ...

34 Pediatric Research and Informatics 451
The project removes many of the obstacles to families’ participation and
enhances study recruitment. The parents of a child with autism face many stressors,
in terms of time, freedom, and finances. They may find it impossible to overcome
the demands of participating in a traditional autism study, such as having to
take time off work or travel to a distant clinic or university. Through IAN, they can
participate over the Internet, from home and at their convenience.
The project takes advantage of the fact that doing research on autism requires
the measurement of nonbiological phenomena: behavior, communication styles
and social approaches. These are usually captured by the use of psychometric
tools, such as the Autism Diagnosic Interview – Revised (ADI-R), which rely
on parent report. It is the people who live with a child with an autism spectrum
disorder (ASD), after all, who naturally possess data on their child’s behavior
and way of being, over time and across settings. Using a web based interface,
IAN solicits parents’ knowledge and experience – information crucial to autism
researchers.
IAN is designed to collect data from the parents of a child with an ASD in a
secure online environment, offering a sense of privacy and other features that make
data collection easier on the parent, such as being able to stop and start the process
at their convenience.
We are currently collecting crucial longitudinal data on a variety of topics, from
diagnosis to comorbidity, from family history to treatments and outcomes. Parents
are also asked to complete the Social Communication Questionnaire (SCQ) and the
Social Responsiveness Scale (SRS) – instruments measuring the core symptoms
of autism over time. Content will be continually added to our online questionnaire
based on the interest of families and researchers alike.
In accordance with our ongoing philosophy of sharing and dissemination, data
collected is not held as proprietary, but is made available for use by the autism
research community. Families are responding with enthusiasm to the opportunity
to provide data and “be part of the solution.” Eighteen months after the project’s
launch, more than 25,000 individuals are consented to participate in IAN, including
over 8,000 children with ASD.
In brief, the Interactive Autism Network is utilizing a robust online shared
research informatics environment, and engaging a vast array of stakeholders in
every step of the research cycle, to facilitate the acceleration of autism research.
Acknowledgments Thanks to Peter Rowe for examples of scientific discovery in pediatrics.
References
1. US Food and Drug Administration. Guidances, Information Sheets, and Important Notices on
Good Clinical Practice in FDA-Regulated Clinical Trials; 2008. Available at: http://www.fda.
gov/oc/gcp/guidance.html. Accessed December 21, 2008.
2. Downs SM, Wallace MY. Mining association rules from a pediatric primary care decision
support system. AMIA Annu Symp. 2000:200–204.