The Interactive Autism Network (IAN)—the first national online autism registry, spearheaded by the Kennedy Krieger Institute, and funded by a grant from Autism Speaks—has registered an unprecedented number of individuals and families living with autism. Never before have researchers been offered access to such a large pool of family-provided data on this puzzling disorder. In only one month, IAN (www.IANproject.org) has achieved significant milestones:
- More than 13,000 registered participants
- Representation in all 50 states as well as the District of Columbia, American Samoa, Northern Mariana Islands, Guam, Marshall Islands and Palau
- Diverse family registration, including: six sets of triplets, 37 sets of identical twins and 157 sets of fraternal twins
Researchers from institutions across the country have already begun to access IAN data to:
- Supplement and enhance current research studies
- Compare and validate existing research results obtained from smaller sample sizes
- Explore hypotheses for future research and search for parallels among individuals with autism and their families in a way that was not previously possible
“The fact that IAN has already become a vital resource for researchers, so early in its lifespan, bodes extremely well for the potential of this project, and ultimately, to the pursuit of answers in autism,” said Dr. Paul Law, DIrector, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland.
IAN has become successful in registering families largely due to the tight-knit nature of the autism community and the outpouring of support from parents. Testimonials continue to echo the great need for and tremendous potential of IAN.
“What better opportunity to help our children, to help each other and to learn more about autism. We have been given the power to DO SOMETHING to combat autism. Go to the website, accept this responsibility & watch us change the future of this heartbreaking disorder.”
– Posted on CNN.com Health Blog by an IAN participant