THIS ARTICLE IS MORE THAN FIVE YEARS OLD
This article is more than five years old. Autism research — and science in general — is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.
The University of California has launched an ambitious 18-month project to connect autism researchers across its ten campuses.
The initiative began with a one-day summit on 14 August at the University of California, Davis MIND Institute, a center for research on neurodevelopmental disorders. More than 50 autism researchers from Davis and four other campuses — Irvine, Los Angeles, San Diego and San Francisco — mingled in between presentations and working groups.
The group represents only a small fraction of autism researchers in the university’s system. In fact, there are so many teams engaged in this field that awareness of projects and expertise at other campuses is spotty.
“It’s kind of like the Galapagos, where we’ve all been on our own little islands,” Elysa Marco, assistant professor of neurology, pediatrics and psychiatry at the University of California, San Francisco, said at the meeting.
If these teams can find a more effective way to collaborate, the potential for progress in autism research will be significant: For example, California is the most populous state in the U.S. and has an estimated 350,000 residents with autism. “It allows one to draw upon a very large population base that the state of California offers,” says Paul Lipkin, director of the Interactive Autism Network, an online registry for studies on autism.
The project also aims to bring together versatile resources from the different centers — for example, a drug discovery platform in Irvine, a stem cell repository in San Diego, connections with the nation’s second-largest school district in Los Angeles, half a petabyte of storage and 1,000 computers dedicated to genomic analysis in San Francisco, and large-scale, long-term studies of environmental factors contributing to autism in Davis.
“These are all campuses that have impressive ongoing programs, so to establish a collaboration across these programs will be very powerful,” says Eric Morrow, assistant professor of biology, psychiatry and human behavior at Brown University in Providence, Rhode Island. Morrow is not involved in the California initiative, but is a leader of the Rhode Island Consortium for Autism Research and Treatment.
The new project is part of a broader trend at the University of California. Last October, the university launched a database of anonymized information on demographics, diagnoses, medications, body mass index and vital signs for 12 million people treated in its health system.
This dataset may help researchers analyze the prevalence of obesity or inflammation in a large number of children with autism in a matter of keystrokes, said Joseph Donnelly, clinical director of the Center for Autism and Neurodevelopmental Disorders at the Irvine campus. “All of a sudden, you can do that.”
Because the database is retrospective, however, it doesn’t give researchers the opportunity to find participants for their research studies. Many of the attendees at the August meeting called for a unified autism research registry that researchers at different campuses can use.
“If nothing else comes out of this effort, we have to at least do that,” said Jonathan Sebat, chief of the Beyster Center for Molecular Genomics of Neuropsychiatric Diseases at the San Diego campus.
Several campuses already have registries, with about 1,500 members in Los Angeles, 1,200 in San Francisco and more than 2,500 in Davis. But pooling them would magnify their effect.
Bringing researchers together can also lead to new ways of asking scientific questions. At the summit, one flurry of conversation had two geneticists — Sebat and Stephan Sanders of the University of California, San Francisco — and an epidemiologist, Irva Hertz-Picciotto of the University of California, Davis, excitedly hashing out how to design a genetics study that would help find environmental contributors to autism.
But executing a collaboration like this is often easier said than done.
“It’s very difficult to achieve that in the end, particularly when people are located in different geographical places,” Lipkin says. “I think it makes sense for the University of California to try to pull this together, but there are a lot of researchers with different priorities and different local demands that will often get in the way.” Each campus has its own administration, political priorities and institutional review board governing biomedical research, for example.
The summit’s participants grappled with some of these issues, such as how to merge information from electronic medical record systems given differences in the way symptoms and diagnoses are recorded.
In that sense, the effort in Rhode Island has an advantage in its small size, says Morrow. “I think that there’s something to the size that is manageable and has allowed us to implement things quickly,” he says. The project launched in 2009 and began recruiting participants for a statewide autism registry earlier this year.
Keeping these concerns in mind, the California project is setting achievable goals. For example, researchers at the summit proposed a statewide study to answer epidemiological questions, such as the incidence of autism among families with no history of the disorder. But they suggested starting with a pilot program that would try to recruit only 100 newborns from each of five campus hospitals.
Over the next 18 or so months, the initiative’s organizers pledge to increase research grants involving multiple campuses, conduct listening sessions with autism families and draft a strategic plan to guide their research.
“If all we did today was have a nice day with reasonably decent sandwiches, that was really a waste,” Leonard Abbeduto, director of the MIND Institute, said in the summit’s closing session. He said he and the rest of the steering committee promise that will not happen, and will contact members regularly to keep the project moving. “The steering committee is going to be a nuisance.”