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."
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."
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.
Paul and Kiely did eventually fulfill their dream of helping residents of the Congo, where they started a health project with 7,000 patients. They also worked in Bangladesh, Egypt, India, and Ethiopia.
The Laws' work overseas continued until 2005, when Paul accepted a position at the Kennedy Krieger Institute in Baltimore to work on the IAN project, which received three years of startup funding from the advocacy organization Autism Speaks. This amounted to about $2 million per year. The project's three main funders are now the Simons Foundation, Autism Speaks, and the National Institutes of Health.
Building a community
In addition to its research study, the IAN project has another component called IAN Community.
Paul describes it as a place where families can go to learn more about autism research. Features of the site include online polls, discussion forums, news articles, and event information.
In the future, the IAN project hopes to apply some of the social networking features of another company with whom it exchanges ideas—PatientsLikeMe.
The Cambridge-based company has developed an online community of patients who share outcome-based data with people who are trying to treat diseases such as ALS (amyotrophic lateral sclerosis).
"We would like IAN to provide more and more value to the families who are participating," says Paul. "PatientsLikeMe functionality would be great."
Although the IAN project would like to improve upon its social networking elements, PatientsLikeMe would also like to learn more about the IAN project's research component. "There are a lot of hurdles that we've overcome that they have yet to overcome," says Paul. "They haven't achieved the research stuff, and we haven't achieved the social networking stuff."
Even though social networking features are still under development, Kiely points out that users of Ian Community are able to view the collective answers of other members.
They can compare their answers against those of other families, which, she says, makes them feel less isolated.
Paul would also like to develop a feature that enables patients to send their medical records to their healthcare provider, eliminating the need for them to reiterate their medical history to every clinician they meet.
Improving short-term and long-term quality of life
Some research efforts may not affect patients until many years after the individual research project ends, such as projects that study the role of genetics in autism. However, other projects, such as one that focuses on how much people pay for applied behavioral therapy, can influence policymakers to change laws and require insurance companies to provide coverage.
"We're engaged in a very broad spectrum of activities— some of which give immediate benefit and some of which give more long-term benefits," Paul says.