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100,000 people with autism participated in study to uncovering genetic causes

A young boy with brown hair and a red shirt that says 'Rock' is holding up a soap bubble device with four soap bubbles around him
SPARK: autism research

One in 54 children in the US has an autism spectrum disorder (ASD). However, ASD is challenging to study due to the varying presentation between individuals. SPARK (Simons Powering Autism Research) is determined to change this. The world’s largest autism research study just passed a milestone at its fifth anniversary: 100,000 people with autism directly participated in scientific research, as well as over 150,000 of their family members.

SPARK’s mission is simple.

They want to speed up research and advance the understanding of autism to help people with autism live their fullest lives. As a national autism research initiative, they connect individuals with an autism diagnosis and their biological family to researchers with the goal to better understand autism and to speed up the development of new treatment options and supports. They do this by uncovering the genetic causes of autism.

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Access to research data

Additionally, SPARK gives scientists access to their data sets, containing medical and genetic information of thousands of individuals and their families affected by autism. This ‘big data’ approach powers and accelerates important, new research that is expanding the understanding of autism – including how and why it affects individuals differently – and gives participants meaningful information and resources to improve their lives.

“Today, thanks to SPARK and the thousands of individuals and families whose participation makes it possible, we have many more answers about autism than just five years ago,” said Wendy Chung, MD & PhD, 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 – and that progress will accelerate as even more families join the SPARK community.”

How does SPARK advance autism research? 

Firstly, they try to find out the genetic causes for autism. To date, 50,000 study participants have provided DNA samples that scientists analyzed to develop deeper insight into the genetic changes that contribute to autism. Their research has already identified 150 genes and segments of chromosomes related to autism. However, according to SPARK, there are likely several hundred more genes they yet have to find. The more people participate in SPARK – individuals with autism, their biological parents and their siblings – the faster researchers can identify these genetic changes. 

“Every individual with autism is unique, and genetic research is helping us to understand why,” said Pamela Feliciano, PhD, Scientific Director of SPARK. “The work of the last five years has produced amazing progress, but the future is even more important and exciting. As more individuals and families enroll, we are growing both the size and the richness of the data. At the same time, we’re building an amazing community that is connecting people with each other as they learn more about what they have in common.”

The second approach SPARK uses to improve the understanding of autism is that they connect the families with other research studies through  SPARK Research Match, enabling studies on everything from biology to behavior. “Participating in SPARK allows our community access to cutting edge research into the causes of ASD,” said Zachary E. Warren, PhD, executive director of the Vanderbilt Kennedy Center’s (VKC) Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), a SPARK clinical site partner. “It allows us to participate in science on a scale that has the potential to radically advance understanding of impairments related to ASD and develop optimal treatments for addressing those challenges.”

A young girl with curly brown hair and glasses is smiling. Text: autism, 5 years of SPARK, Advance research together
5 year anniversary: SPARK celebrates advances of autism research

SPARK has had a major impact on autism research

  • Since launching in 2016, over a quarter of a million people, including 100,000 people with autism, have joined SPARK.
  • DNA from 50,000 participants, including 23,000 people with autism, has been sequenced and made available to qualified researchers.
  • SPARK has notified just under 700 participants about a genetic cause for their autism.
  • 33,676 families have taken part in over 100 SPARK Research Match studies, ranging from the study of a neurobiological basis of atypical language development, to a clinical trial for a specific genetic cause of autism, to repetitive thinking patterns in autistic adults.
  • 179 scientists have requested and used SPARK data to further autism research.
  • Over 20 published scientific papers have used SPARK data, making discoveries about motor impairments, the impact of COVID on children and adults, and rare and common genetic risk variants associated with autism.
  • Using SPARK Research Match, researchers have published an additional ten scientific papers on topics ranging from special interests to depression in autistic adults and the impact of COVID-19 on the autism community.

“The large and diverse group of SPARK participants is allowing us to answer questions about ASD in a much more powerful way than was possible in the past,” said Laura Arnstein Carpenter, PhD, assistant professor of pediatrics at the Medical University of South Carolina (MUSC), another SPARK clinical site partner. “In the past we were limited by geography to small samples of participants who may not be representative of the autism community as a whole. SPARK has allowed us to recruit more broadly and inclusively so that our research better reflects the population of people affected by ASD.”

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Stronger together

On top of their research studies and partnerships with clinical sites, SPARK also teamed up with national and local autism community organizations that traditionally mostly focused on providing services, advocacy and resources for individuals with autism. By working together, these organizations help their members to be part of autism research, and, at the same time, they support SPARK to find more research participants and spread the word about this landmark study. 

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