A multi-year, national online research program on autism, believed to be the largest ever conducted in the United States, officially launched on April 21 with the goal of getting DNA from 50,000 individuals and their families, generating an enormous amount of data for researchers to learn more about genes that can cause autism.
The Simons Foundation Autism Research Institute (SFARI) is funding and directing the research, whose project name is SPARK. Participants and researchers will collaborate via web portals. “We want to work with the community to understand their challenges and to give information back to them,” says Wendy Chung, M.D., director of clinical research at SFARI.
Wendy Chung, M.D. Questionnaires that participants complete can help researchers understand ways of measuring behaviors and challenges, such as wandering and bullying, and if families have found solutions. And, as researchers discover breakthroughs, such as finding genes that might be causal factors of autism, they can disseminate that information to physicians and other appropriate professionals.
“This is not a one-and-done program,” Chung says. “You will hear from us; this is a long-term, committed relationship, and we will make families aware of other research opportunities—a matchmaking service.”
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Following focus group surveys last year on the challenges that families with autism face and the questions they have, about 300 families participated in a soft launch that started just before the end of 2015, Chung says.
DNA will be collected through saliva samples by spitting in a tube or via a cheek swab. Individuals who have a professional diagnosis with autism and their families can participate at sparkforautism.org.
The research is a landmark initiative because the amount of data to be analyzed will be magnitudes larger than previous studies, according to Chung. Data will be de-identified and made broadly assessable to qualified researchers.
Among other sources, data will come from genetic samples and individual and family surveys assessing how well an individual or family are doing over time, differences in sleeping patterns, gastrointestinal and behavior issues, medications and behavioral treatments, and even MRI images or EEG brainwaves.
How long the research will last remains open-ended for now, Chung says, but the foundation has plans for going up to 20 years. “This is a real opportunity to make an impact on an unprecedented scale.”
(This article appears courtesy of our sister publication, Health Data Management)
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