Kaiser Permanente is about to begin what is believed to be the largest genetic research project ever conducted by a health organization into the causes of autism, gathering biological and other health information from 5,000 Northern California families who have a child with the developmental disorder.

Scientists have long suspected that autism results from a combination of genetics and environmental factors, but no one knows for sure. They hope a study of this size will reveal the root causes that could eventually lead to improved diagnoses and new treatments.

“This is an opportunity for the families who are affected by autism to really contribute their expertise and experience and help find answers,” said Lisa Croen, director of the autism program at Kaiser’s Division of Research in Oakland, Calif. and the study’s principal investigator. “It’s definitely a huge scientific contribution in enhancing our understanding of autism, what causes it, how to treat it in the future and possibly even prevent it.”

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Autism is a complex neurodevelopmental disorder characterized by a range of symptoms that include difficulties in communicating, social impairment and repetitive patterns of behavior.

For unknown reasons, the number of children diagnosed with the disorder has been rising for years in the U.S., with the latest government figures estimating it occurs in 1 in 68 children. That’s about 120 percent higher than 2002 estimates.

Researchers hope the Kaiser study will help them understand what’s behind the acceleration in autism cases. They will begin recruiting families in July.

“There have been a lot of genetic studies done, and the one thing we know for sure is it’s very complex,” said Neil Risch, study co-investigator and the director of the Institute for Human Genetics at the University of California, San Francisco. “It’s not likely there are just one or two ‘smoking gun’ genes contributing to it.”

The study, called the Autism Family Research Bank, was funded by a $4.6 million grant from Simons Foundation, a charity that supports a variety of health and social welfare initiatives. The grant will fund the recruiting of families and the collecting of detailed genetic, medical and environmental information, all of which is expected to take three years.

In all, 15,000 people will be recruited — two biological parents and a child with autism under age 26. The participants must be Kaiser members and any data collected will be fully scrubbed of personal information to protect participants’ privacy.

Croen, the lead investigator, estimates that about a third of eligible families in Northern California will ultimately opt to participate. She said the time commitment will be minimal, requiring just a blood or saliva sample and the completion of a short questionnaire covering family history and other factors.

Sequencing the entire genome of the participants is likely, and the data will be made available to qualified researchers for years to come, researchers said.

In addition to looking closely at the genetics, researchers will study other prime suspects associated with autism such as the age of the parents, environmental exposures during gestation and the early post-natal phase, immunological abnormalities and additional health issues such as seizure disorders.

It’s helpful that Kaiser will already have a depth of health information about the participants because they are Kaiser patients, said Risch, an adjunct investigator for the giant health care organization’s Division of Research.

“It’s not just that we have diagnostic information on these kids. We know every medical condition they have, and we know every medical condition their parents have,” he said.

Kaiser member Tracey Bullock of San Francisco plans to participate in the study with her husband and 6-year-old son, who was diagnosed with autism four years ago. She said neither she nor her husband had any known risk factors for having a child with the disorder.

“The only way to get answers is by contributing to the current body of research,” said Bullock, who serves on the community advisory board for Kaiser’s Autism Research Program. “Not only does it help us, but everyone affected by it.”

Local advocates for autism coverage and research who are not involved in the study also were excited by the prospect of such a large effort.

“It sounds like it’s a great opportunity. They’ve got rich data sets over time, the same population, families,” said Karen Fessel, executive director of the Autism Health Insurance Project in Lafayette, Calif.

Kristin Jacobson, executive director of the Autism Deserves Equal Coverage Foundation in Burlingame, Calif., said she’s looking forward to what researchers find out. “I’m certain there are going to be many types of autism,” she said, “but in order to identify them, research on this scale is really important.”

© 2015 San Francisco Chronicle
Distributed by Tribune Content Agency, LLC

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