Autism Research Database Cuts Cost, Connects Patients
One could argue that research participants are not selected at random using IAN; however, researchers also know a lot more about participants, such as their socioeconomic status levels, than they would through conventional recruitment methods.
"We have a self-selective population because if a family is joining, obviously they're willing to share information to a point," says Paul Law. "When we present them with research opportunities by a third party, then they're more likely to join those projects than the general population."
Security is not an issue, since IAN members are in control of what they want to divulge on the network. The site also has security measures to protect their data. For example, the information it shares with researchers is de-identified.
The origins of IAN actually begin in the Congo, where Paul spent his youth with his missionary parents. This experience had such an impact on him during his formative years that he was determined to earn a medical degree in the United States and return to the Congo to help address the country's vast health needs.
However, plans changed—albeit slightly.
During medical school at Johns Hopkins, Paul got married and his wife Kiely gave birth to their son. Three years later, in 1996, doctors diagnosed their son with autism.
As parents of a newly diagnosed autistic child, the Laws quickly learned that providing early intervention is critical to children with autism because of the small window of opportunity during which treatment is effective. To fuel their need for information, Paul decided to enroll in classes to learn more about autism.
"Our interest in autism was really born out of a lot of the frustrations we were having," says Kiely. "There wasn't a lot known about autism or a lot printed."
Paul later worked with the Cure Autism Now Foundation and developed an Internet-based software platform for autism researchers called ISAAC, or Internet System for Assessing Autistic Children. The platform is still in use by more than 100 national and international research projects. However, what ISAAC lacked was a direct interaction between the platform and families, many of whom still lacked Internet access in the late 1990s.
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