OAKLAND, Calif. — 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. (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 Research Bank.
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 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 of any age with an autism spectrum disorder should send an email to firstname.lastname@example.org or call 1-866-279-0733. 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.”
About the Kaiser Permanente Division of Research
The Kaiser Permanente Division of Research conducts, publishes and disseminates epidemiologic and health services research to improve the health and medical care of Kaiser Permanente members and society at large. It seeks to understand the determinants of illness and well-being, and to improve the quality and cost-effectiveness of health care. Currently, DOR’s 550-plus staff is working on more than 250 epidemiological and health services research projects. For more information, visit www.dor.kaiser.org or follow us @KPDOR.
About Kaiser Permanente
Kaiser Permanente is committed to helping shape the future of health care. We are recognized as one of America’s leading health care providers and not-for-profit health plans. Founded in 1945, Kaiser Permanente has a mission to provide high-quality, affordable health care services and to improve the health of our members and the communities we serve. We currently serve approximately 9.6 million members in eight states and the District of Columbia. Care for members and patients is focused on their total health and guided by their personal physicians, specialists and team of caregivers. Our expert and caring medical teams are empowered and supported by industry-leading technology advances and tools for health promotion, disease prevention, state-of-the-art care delivery and world-class chronic disease management. Kaiser Permanente is dedicated to care innovations, clinical research, health education and the support of community health. For more information, go to kp.org/share.