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.
With the Autism Family Biobank, 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 participants’ privacy.)
“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, California.
The Autism Research Program received a $4.6 million grant from the Simons Foundation to create the autism research bank over the next three years, although the data will continue to be available to qualified researchers for years to come.
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 for the new research bank. “This study can point us toward the answers.”
Studies of twins and families provide 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.
Because autism is a complex condition involving many genetic factors interacting with environmental conditions, advances 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 University of California, San Francisco Institute for Human Genetics and co-investigator of the Autism Family Biobank.
This study is part of Kaiser Permanente’s ongoing research to understand the relationship between genetics and health. The Kaiser Permanente Research Program in Genes, Environment and Health, in Oakland, Calif., has a biobank linking comprehensive electronic medical records, data on relevant behavioral and environmental factors, and blood and saliva samples from consenting Kaiser Permanente members. Kaiser Permanente will soon launch the Kaiser Permanente Research Bank, an effort that will include all Kaiser Permanente regions and involve research aimed at improving disease diagnosis, treatment and prevention. In addition, in 2013 the Kaiser Permanente Center for Health Research received $8.1 million from the National Institutes of Health to conduct a novel clinical trial using whole genome sequencing to test women and their partners for mutations that could cause rare but serious diseases in their children.
Members of Kaiser Permanente Northern California who are interested in participating and have a child under age 26 with an autism spectrum disorder should send an email to 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,” said Croen. “We can’t do this without Kaiser Permanente members.”