Interactive Autism Network
Every day, researchers from around the world are seeking answers to a myriad of questions about autism spectrum disorders (ASD), and looking for insight into causes and treatments. When one in every 100 children will receive a diagnosis of autism each year, the need for research to move ahead is urgent. Yet hundreds of research projects are put on hold because researchers simply do not have enough qualified participants to gather the information they need to make progress in their studies.
While there are an estimated 1 to 1.5 million people in the United States living with ASD, fewer than 10 percent of them participate in research studies. By comparison, 94 percent of all children younger than age 15 diagnosed with cancer are enrolled in research, which has lead to remarkable advances and many proven treatments. "As the parent of a child with autism and as a researcher," says, Dr. Paul Law. "I knew that when researchers and parents aren't connected, autism research can't advance."
That's why Dr. Law, with the visionary leadership of the Kennedy Krieger Institute and support from Autism Speaks, a nonprofit organization dedicated to increasing awareness about the growing autism health crisis, created the Interactive Autism Network (IAN).
The network has helped build a bridge between those affected by autism spectrum disorders and researchers in the field. The Interactive Autism Network invites individuals and their families to share information from the comfort of their homes and become part of the nation's largest online autism research effort with over 30,000 participants to date. The data collected facilitates scientific research, matches families with ongoing studies, and empowers community leaders to advocate for improved services and resources.
Since its launch in 2007, IAN has helped scientists recruit individuals for more than 230 studies-many of them previously impossible because of insufficient data. Twins, for example, are rare overall and twins with autism even more so. Before IAN, the largest study of autism in one or both twins was carried out with only 50 twin sets.
"Our study had 277 twin sets, allowing us to look at more facets of the disorder and with a greater level of detail," Dr. Law says. In another project, preliminary findings indicated an alarming rate of depression in mothers of children with autism. Further study revealed a surprising link between maternal depression and children with a higher functioning type of autism. Every bit of information collected is helping researchers better understand ASD.
"Families who participate in IAN are joining a living, breathing project," says Dr. Law, "and they appreciate the wealth of information that IAN represents. For that information to have helped so many projects get off to a rolling start in such a short period of time is incredibly gratifying."
Written by Martie Callaghan
For more information about the Interactive Autism Network, visit www.IANProject.org.
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