SPARK is a nationwide study to research the genetics involved in autism, reports the Chicago Tribune. This nationwide study plays out locally in Chicago as Ilan Chen-Byerley, a Northfield, IL pediatric occupational therapist, participates with her son Max. Diagnosed with autism and what his mom proudly boasts is “verbal, totally callable and very bright,” he is one of about 1.5 million in the U.S. Ms. Chen-Byerley recently sought to learn more about her son’s link between autism and genetics. Max earned a degree from Southern Illinois University, and he and his mom were among 20 in the Chicago area to participate, providing a saliva sample. The Byerleys are contributing to the study team’s mission to identify specific genetic markers for autism.
SPARK Study from the Windy City to the Entire Nation
Rush University is representing this study in the Chicago area. Its sponsor’s goal is to collect 50,000 people’s samples to generate enough “deep data” for a more in depth, rich, exploratory analysis of the connections between autism and genetics.
In Chicago, local SPARK research coordinator Holly Lechniak, noted, “It is still a relatively new diagnoses and it is one that we are still learning a lot about. It is an incredibly heterogenous disorder.” The Chicago Tribune further quoted Ms. Lechniak, “It is not the only component, but it is a large component” in regard to whether genetics are a factor with autism. Moreover, she explained “Most of the time there is not a single pathway to autism. We know there is a very large genetic component often interacting with environmental factors.”
Max’s sample will be sent to a genetic lab for a sequencing analysis to identify whether there is a known genetic marker present in the participant’s DNA, noted Ms. Lechniak.
200 institutions are participating in the SPARK study nationwide. The largest genetic study of autism ever, the sponsors seek to understand what makes each and every individual with autism unique—as well as what connects them. Clinical site partners represent some of the biggest brands in academic medicine as well as health systems. The study website provides an interactive map of the study evidencing its scale and breadth across the country. A representative sample of study participants share some of their story as well.
According to the sponsor’s consent form, the goal of SPARK is to recruit 50,000 individuals with Autism Spectrum Disorder (ASD) and their family members, to identify the causes of autism and to accelerate future clinical research on ASD. The information from this study will help to identify genetic and non-genetic factors that contribute to ASD. A limited data set from this study, which removes information that may directly identify any participant, their relatives, or household members, will be made available to qualified researchers, which may include researchers who may be sponsored by companies who are trying to develop new supports and treatments for autism or other conditions. The participant is asked to agree to submit saliva for themselves and/or their children for DNA analysis. Participants can join SPARK even if they do not consent to submit a saliva sample. If there is difficulty in providing a saliva sample, participants will be asked to agree to submit a blood or other sample for DNA analysis.
The Simmons Foundation Autism Research Initiative
The Simmons Foundation Autism Research Initiative is a research program established in 2005 by the Simmons Foundation, which focuses on all aspects of autism research. The organization has funded more than $200 million in autism research to 150 different investigators since 2007. Marilyn Simons, the Simons Foundation’s president, is on the board of directors, as are David Eisenbud and James H. Simons. One specific type of research they specialize in is mouse models of autism, which they are trying to make more available in cooperation with the Jackson Laboratory.
Wendy Chung, MD, PhD