After 13 Years, Pioneering Autism Research Registry Shuts Down
A first-of-its-kind autism registry that collected research data from thousands of families across the country has closed after 13 years and the publication of hundreds of studies on everything from bullying to mood disorders.
The Interactive Autism Network, known as IAN, ended operations at the end of June after helping its primary funder, the Simons Foundation, launch a broader research initiative, said Dr. Paul Lipkin, director of IAN. The new registry, SPARK (Simons Foundation Powering Autism Research for Knowledge), started in 2016 with a goal of collecting genetic data from 50,000 families.
Parents of children with autism and adults on the spectrum had participated in IAN by responding to online surveys on topics such as medical history, social communication and therapies and updated the information they provided over time. Additionally, IAN put willing families in touch with outside researchers seeking study participants.
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Researchers described IAN as an invaluable resource and said SPARK will continue to facilitate social and behavioral studies despite its emphasis on biological research.
“If there was no SPARK, losing IAN would have been a devastating loss to us,” said Dr. Antonio Hardan, a psychiatrist and autism researcher at Stanford University. “The fact that we have SPARK now, I think there is considerable overlap between the two.”
Lipkin said IAN was notable for allowing more than 26,000 families to participate in research by responding to surveys in their own homes without traveling to academic research centers. Additionally, IAN was nimble enough to quickly produce new surveys and then publish research based on real-time concerns raised by parents, such as children wandering.
“It was the first patient-powered research network in autism,” Lipkin said. “When it was created in 2006, there were many more questions than answers around autism, and we recognized that families ought to contribute and have a say about their experience. IAN gave them a voice and gave them an opportunity to be active participants in expanding knowledge around the world.”
IAN used survey data submitted by families for publication of 50 papers that its researchers co-authored. It also matched willing participants to roughly 500 outside studies but exact figures were not available on how many of those have been published.
For instance, when Hardan struggled to recruit enough twins in California for a neuroimaging study, he turned to IAN. Families from as far as Florida and New Jersey flew in to participate, he said.
“Having access to something like IAN that opens up the whole country to us has been very crucial in implementing some of the studies we’ve done over the years,” Hardan said. “The advantage about having a registry where parents sign up is we know these parents are interested in research in contrast to people that you meet clinically.”
Hardan said IAN was also nonintrusive and not all families are willing to give DNA samples. Saliva samples for genetic testing are encouraged but not required for participation in SPARK.
SPARK is also using surveys and researchers said IAN’s legacy of studying behavioral issues won’t end.
Lipkin said IAN families have been encouraged to join SPARK, although he doesn’t know how many have done so. Hardan said Stanford is working on a behavioral study and plans to recruit participants from SPARK.
“Investigators who are doing behavioral studies or quality-of-life or non-biological studies who are interested in using SPARK will be able to use SPARK,” Hardan said. “That’s important.”
Self-advocate John Elder Robison who serves on the board of the International Society for Autism Research said he’s not sure how much benefit most people with autism saw from IAN studies or will gain from SPARK.
Rather than focus on biological causes of autism and prevention, he’d like to see researchers develop ways to help build social skills, make friends and address other quality-of-life issues.
“There’s more and more of us that are outspoken adults and we feel that we should have a voice on how research dollars are spent on our behalf,” Robison said. “Who would know better than autistic people?”