Published on in CHOP News
Children’s Hospital of Philadelphia’s (CHOP) Center for Autism Research (CAR) invites area families to participate in the SPARK study, short for Speeding Up Autism Research through Knowledge. The Simons Foundation funded initiative is the largest study ever undertaken to understand the complex genetic underpinnings of autism spectrum disorder (ASD), and the end goal of the study is to reduce the time it takes to make scientific breakthroughs in autism research.
To do this, the Simons Foundation, CHOP, and 26 other clinical sites across the country have teamed up to enroll 50,000 individuals with autism and both biological parents in the largest-ever genetics study of autism. With a large pool of existing data, Simons hopes to make it easier for scientists to study various aspects of autism spectrum disorder.
The CHOP study site is led by CAR Director Robert Schultz, PhD, and pediatric neuropsychologist Juhi Pandey, PhD, along with their research team. Over 3,000 individuals have already participated in SPARK through the CHOP study site since its beginning three years ago, but many more are needed in order to reach the study’s ambitious goals.
Participation is open to anyone with a community diagnosis of autism and their biological parents and siblings. If individuals are adopted or don’t live with their biological parents, that’s OK, they’re still welcome to join the study.
As a member of the SPARK network, participants may receive results of the genetic testing, feedback on the questionnaires they complete, and access to more autism studies, free webinars and more. Enrollment into the study can be done either online or in person with a SPARK research assistant; it consists of a 20-minute registration and saliva sample collection from all participating family members. Once the saliva kits are back in the lab, account holders receive an Amazon gift card.
A new initiative address disparities in autism research head-on
The SPARK team at CHOP has been awarded a one-year supplemental grant supporting a new initiative to reduce racial disparities in autism research with funding from the Simons Foundation. This grant allows the team, led by Dr. Pandey, to learn firsthand from providers and community members about what barriers to research exist for minority and low-socioeconomic status (SES) families, and to apply that knowledge when taking a new approach to engaging with these populations.
This funding will allow CAR to prioritize inclusion of families who are under-resourced economically, and who are racially diverse, so that the genetic data we collect more accurately represents the broader population of individuals with ASD in the region. These individuals are typically under-represented in medical research, possibly leading to a skewed understanding of the needs and characteristics of the full population of families and individuals living with ASD.
For more information about the SPARK study, watch this recent ABC News story about SPARK. Families interested in participating can sign up online, and a researcher from CHOP will even make home visits to make the study more accessible for all families.
Categories: Autism Spectrum Disorder