The Utah Registry of Autism and Developmental Disabilities, or URADD, would contain medical histories and would be available to researchers.
"The [autism] research is currently underway, but there isn't enough data to make it meaningful," said the bill's sponsor, Rep. Eric Hutchings, R-Kearns. "That's the big hole we're dealing with."
The registry would also serve as a "one-stop shop" for families seeking information and resources, Hutchings said. The bill includes a public education campaign.
Judith Zimmerman, an assistant professor of psychiatry at the University of Utah - which would operate the registry - said it is much needed, noting the rate of autism is "drastically changing and we don't know why."
A recent prevalence study showed that one Utah child in 133 has autism - a rate that is 20 times higher than was estimated in a study in the 1980s.
The study also found that boys are nearly seven times more likely than girls to have autism; that Utah has the nation's highest rate of late-onset autism, and that autism is Utah's fastest growing serious developmental disability.
"You have to be in awe and say, 'My gosh, what is going on?' " said Joyce Dolcourt, director of public policy for The Arc of Utah. "I think the registry will give us another tool to understand what's happening."
Zimmerman said an autism registry would help researchers measure changes in prevalence over time, identify what causes autism and understand the scope of the problem.
An estimated 6,339 Utah children have autism spectrum disorders. Their combined economic costs are well above $20 billion across their lifetimes, she said.
"What this will allow us to do is address a lot of the issues we really don't understand yet," said George Delavan, director of the Utah Department of Health's Division of Community and Family Health Services.
No one knows what the underlying causes of autism may be, though "it's probably some combination of genetics and environmental factors - but we really haven't sorted that out yet," Delavan said.
The bill provides for an ongoing appropriation of $350,000 of general fund money for the Utah Department of Health to contract with the U. to run the registry.
"I believe that this [the registry] is a missing link," said Rep. David Litvack, D-Salt Lake City. "The House Health and Human Services Appropriations Subcommittee ranked this very high, recognizing this is a critical need."
He added, "I think this is an excellent bill and something we need to do."
