A new Kaiser Permanente study will gather genetic material from 5,000 member families in order to undertake urgently needed research on autism spectrum disorders.
“Our goal for this new research bank is to create a resource that helps guide the development of effective autism treatments,” said Lisa Croen, PhD, director of the Autism Research Program at the Kaiser Permanente Division of Research in Oakland.
Autism is a relatively common neurodevelopmental disorder — defined by impairments in social interaction and communication, and restricted and repetitive patterns of behavior — that occurs in 1 in 68 children.
“We don’t know what causes autism, or why it is increasingly prevalent,” said Croen, principal investigator on the new research bank. “This study can point us toward the answers.”
With the Autism Family Research Bank, researchers will for the first time have access to detailed genetic, medical, and environmental information on “trios” — two biological parents and their autistic child under age 26. (All data collected will be fully de-identified to protect member privacy.)
Research on twins and families has provided strong evidence for a genetic contribution to autism spectrum disorders, while a growing body of evidence also supports a critical role for environmental factors, especially during gestation and the early postnatal period.
The Autism Research Program received a $4.6 million grant from the Simons Foundation to create the autism research bank over the next 3 years, although the data will continue to be available to qualified researchers for years to come.
Because autism is a complex condition involving many genetic factors interacting with environmental conditions, studies require very large numbers of families to participate in genetic epidemiology research to find the underlying causes.
“Large numbers of participating families will also help speed the development of autism treatments and preventions by enabling the identification of patterns that would not be apparent by looking at each person individually,” said Neil Risch, PhD, director of the UCSF Institute for Human Genetics and co-investigator of the Autism Family Research Bank.
Members of Kaiser Permanente Northern California who have a child under age 26 with an autism spectrum disorder are being directed to send an e-mail to mailto:firstname.lastname@example.org or call 866-279-0733. Researchers will be in touch this summer to request blood and/or saliva samples from both biological parents and the child with an autism spectrum disorder, and completion of a short questionnaire.
“Family participation is critical,” Croen says. “We can’t do this without Kaiser Permanente members.