Direct participation is powering discoveries about the causes of autism and the development of targeted treatments and supports.
NEW YORK CITY, NY / ACCESS Newswire / April 21, 2026 / A decade after its launch, SPARK (Simons Foundation Powering Autism Research for Knowledge), the world’s largest autism study, is entering a new phase of discovery. With continuous funding from the Simons Foundation and Simons Foundation International, SPARK now has more than 400,000 autistic individuals and family members participating. SPARK is open to all individuals regardless of age living in the U.S. with a professional diagnosis of autism and their family members. In ten years, SPARK has built an unprecedented research community that is accelerating the search for insights that can lead to more effective treatment and support.
An estimated 1 in 31 U.S. children has autism, but it remains challenging to study given how much autism varies across individuals, and even across any one individual’s lifespan. For 10 years, SPARK has given both established and early-career researchers direct access to powerful de-identified datasets containing medical, developmental, behavioral, and genetic information from hundreds of thousands of individuals and families affected by autism. These data have already fueled important research that is expanding the understanding of autism-including how and why it affects individuals differently-and has provided meaningful information and resources to improve their lives.
“Thanks to the thousands of dedicated SPARK participants, we have many more answers about genetic contributors to autism, thereby understanding better how the brain works and how it works differently in individuals with autism,” said Wendy Chung, M.D., Ph.D., SPARK’s Principal Investigator, geneticist and pediatrician. “Genetic research continues to yield new insights that are moving us toward individualized approaches to treatment and more effective support for those who need it. That progress will accelerate as even more families join the SPARK community.”
SPARK’s unparalleled scale now positions it for a bold new chapter: one that will advance both genetic and phenotypic insights, support more robust and reproducible science, and move the field closer to precision approaches to care. This scale is transforming what is possible in autism research-enabling scientists to study autism’s complexity with the statistical power needed to drive significant discoveries.
In the past year, SPARK has transitioned from whole exome sequencing to whole genome sequencing. Whole exome sequencing reads only the small portion of DNA that contains protein-coding genes (about 1-2% of the genome), whereas whole genome sequencing reads all of a person’s DNA, including both protein-coding genes and the vast stretches of ‘non-coding’ DNA that help regulate how those genes work. This shift aims to illuminate how both parts of the genome contribute to autism. As more individuals join SPARK and contribute saliva samples to provide DNA, scientists will continue to learn more about these critical genetic contributions.
In addition to genetic data, SPARK collects physical and behavioral data from participants through standardized measures and surveys. SPARK aims to understand co-occurring conditions, language development, and restrictive or repetitive behaviors. SPARK adheres to the highest standards of research ethics to protect the privacy and the security of the data.
“By staying connected with participants over time, we can better understand how autism shapes lives across the lifespan. Those long-term insights bring us closer to a more precise, personalized understanding of each individual’s experience,” said Kelsey Martin, M.D., Ph.D., Executive Vice President, Autism and Neuroscience at the Simons Foundation.
“SPARK is an indispensable partner in our mission to understand adulthood and aging in autism. Without SPARK’s unique resources, conducting research on this underrepresented segment of the autistic population would remain a significant challenge,” said Gregory Wallace, Ph.D., SPARK researcher and professor at The George Washington University. “SPARK also facilitates our longitudinal research, allowing us to follow up with autistic adults and to document their lived experience over time in ways that have rarely been described in the extant literature.”
Looking to the next decade, SPARK’s size will also enable foundational research into the diverse ways in which autism presents, how it develops, and how it impacts individuals throughout their lifetimes.
To recruit and retain participants, SPARK engages both its clinical site network of over 30 research centers and academic institutions, as well as national and local autism community organizations. These partnerships allow SPARK to increase participation across the country among underrepresented communities to ensure discoveries benefit all families affected by autism.
“SPARK will continue to play a significant role in our understanding of autism for years to come. This unprecedented-and growing-cohort allows investigators to efficiently address a wide variety of questions so that we can get answers about autism faster,” said Robin Kochel, Ph.D., Principal Investigator at SPARK’s Texas Children’s Hospital clinical site.
About SPARK
SPARK (Simons Foundation Powering Autism Research for Knowledge) is a national autism research initiative that is catalyzing autism research by connecting individuals with a professional diagnosis of autism and their biological family members to research opportunities to advance the understanding of autism. SPARK’s goal in doing this is not only to better understand autism but to accelerate the development of new treatments and supports. SPARK is funded in its entirety by the Simons Foundation and Simons Foundation International.
For press inquiries, please email Dominique.Stilletti@childrens.harvard.edu.
SOURCE: Simons Foundation
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