Project Aims To Collect DNA From 50,000 With Autism
An unprecedented new effort aims to collect genetic information from tens of thousands with autism and their families in order to learn about the disorder’s causes and treatment potential.
Known as SPARK, the project launching this week is welcoming people with autism of all ages from across the country to participate in what researchers are calling a first-of-its-kind effort with an unparalleled scope.
“This is definitely a landmark study,” said Wendy Chung, the project’s principal investigator and the director of clinical research at the Simons Foundation Autism Research Initiative, which is funding SPARK. “No researchers, no organization has ever attempted anything of this magnitude in autism before.”
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To participate, individuals with autism or a family member are asked to fill out a 20-minute online questionnaire about their medical and family history. Those who choose to contribute their DNA will be sent a cup in the mail to provide a saliva sample and return.
Each sample will undergo advanced genetic analysis. Families will be notified if the results pinpoint a genetic cause of a particular person’s autism.
“This is a free genetic test conducted by scientists who are extremely knowledgeable in autism, so it may be even more valuable than the genetic testing done in the community,” Chung said.
Already, researchers have collected genetic samples from about 2,000 people with autism during a pilot phase of the program and they say they are on track to take in samples from 50,000 people on the spectrum within three years. In addition to those with autism, they are also seeking samples from parents and siblings.
Data collected through SPARK will start becoming available to researchers in the United States and around the world later this year, Chung said, to use in efforts to understand what’s behind autism and how to address the challenges faced by those with the developmental disorder. What’s more, she said SPARK will serve as a database researchers can turn to in order to identify candidates for future studies.
In the short-term, Chung said she hopes that families can get quick answers from genetic testing and researchers may be able to draw immediate conclusions about some facets of autism from the information families provide. With time, however, the data collected could lead to larger innovations like medications or therapies, she said.
Officials declined to say how much money the Simons Foundation is putting up for SPARK, but indicated that they are committed for the long haul, with the research component of the initiative expected to span decades.