SPARK, the world’s largest autism research study, is part of the Simons Foundation Autism Research Initiative, or “SFARI.”
Marilyn and Jim Simons founded the Simons Foundation over 26 years ago to advance basic science — science that uncovers how the world works. The Simons family provides all funding for the foundation, so the foundation — and SPARK —do not need to fundraise. The foundation has $4.6 billion in assets for its work.
About 15 years ago, the Simons saw that not much was understood scientifically about autism, even though so many people are affected by it. Because they had a family member with autism, they decided to help fund research in this area. In 2006, the Simons Foundation launched SFARI to improve the understanding, diagnosis, and treatment of autism spectrum disorders. Today, SFARI is one of the world’s largest autism research funders, supporting scientists around the globe trying to understand the disorder.
When SFARI began, its team knew that one powerful way to investigate autism is through genetics. However, genetic studies require large numbers of participants and recruitment is a huge and expensive task for researchers. So SFARI’s first major project was to recruit 2,500 families with a child on the autism spectrum. Together, these families and their genetic information, or data, are called the Simons Simplex Collection, or SSC. The SSC is now a permanent repository of genetic samples and data that are available for free to all qualified researchers. This was SFARI’s first collection of family genomes, and it proved to be invaluable to a new generation of autism researchers, launching much new work.
In 2011, SFARI launched the Simons Variation in Individuals Project to better understand genetic neurodevelopmental conditions, specifically those associated with autism. This project became affiliated with SPARK and was renamed Simons Searchlight. Simons Searchlight brings together families that have the same genetic diagnosis, so that they may share experiences, learn and create a community.
The data from SSC began a new wave of research and knowledge about autism. In 2016, SFARI launched SPARK, or Simons Powering Autism Research for Knowledge. SPARK is recruiting 50,000 families — making it the largest autism study ever. Through partnerships with 31 clinical sites across the country, almost 100,000 people with autism, 28,000 families, and 275,000 individuals have enrolled in SPARK. The size of the SPARK cohort will allow identification of almost all of the genes that are responsible for autism. This will then kickstart progress in areas outside of genetics.
All SPARK participants who submit saliva samples contribute significantly to this genetics work. Importantly, if a SPARK participant is found to have a gene change that is linked to autism, that person will be contacted by SPARK to learn about their result through a genetic counselor. This is done only if the participant has chosen to be informed of their genetic results.
It is SPARK’s legal and moral obligation to safeguard the data entrusted to us by participants. Once SPARK has your data, we create a code for your data called a Global Unique Identifier, or GUID. The GUID allows researchers to share and match up participants’ data without identifying who they are. And SPARK will never sell your data, in any form. Genetic or other information gathered will never be sold.
Join SPARK to help advance autism research. Together we can make a huge difference in the lives of individuals and families that are affected by autism. The Simons Foundation is committed to autism research for decades to come.