The Simons Foundation Autism Research Initiative (SFARI) is pleased to announce that phenotypic data from 251,082 individuals enrolled in SPARK (Simons Foundation Powering Autism Research for Knowledge)¹ are now available to approved researchers via SFARI Base. This includes data from 99,447 individuals with autism spectrum disorder (ASD).

A summary of the available data is listed below:

• 84,005 children with ASD (under 18 years of age)
• 15,303 adults with ASD
• 139 participants with ASD with unknown ages
• 75,099 males with ASD
• 24,348 females with ASD
• 40,672 unaffected siblings
• 6,273 enrolled twins, triplets and quadruplets
• 13,953 multiplex families

Detailed medical and developmental history are available as part of this data release, including behavioral questionnaires such as the Developmental Coordination Disorder Questionnaire (DCDQ), Repetitive Behavior Scale-Revised (RBS-R), Social Communication Questionnaire (SCQ), and Vineland Adaptive Behavior Scale (Vineland-3). Also available for a subset of ASD adults and children are Intelligence Quotient (IQ) data abstracted from medical records and data collected from research match studies (standardized questionnaires as well as non-standard measures such as impact from COVID-19).

An overview of the subgroups for whom phenotypic data is currently available, as well as the demographics of the SPARK sample, can be found here.

“Many thanks to those families who continue to answer our SPARK surveys, even in these challenging times,” says Wendy Chung (principal investigator of SPARK and director of clinical research at SFARI). “We are learning a lot about autism from the SPARK data, including how COVID-19 has affected our community.”

Who can use the data?

The data are available for use by all approved researchers, regardless of SFARI funding. Research projects are not restricted to autism or other neurodevelopmental conditions, and there is no publication embargo associated with these data.

How can the data be accessed?

Researchers can log in to SFARI Base and apply to use the data. The application will be reviewed by SFARI staff, and once approved, researchers will be provided with information on how to download the data.

Researchers who have previously applied and been approved to access SPARK phenotypic data (i.e., from an earlier SPARK data release) will automatically have access to this latest data release. Simply log in to SFARI Base to view and download the latest data set.

Are any other SPARK data (besides phenotypic data) currently available?

Genomic data (whole-exome sequencing and genome-wide genotyping data) for 27,615 participants (including 5,279 simplex families with 2,785 unaffected siblings and 2,529 parent-child duos) are currently available via SFARI Base.

What types of research projects are SPARK phenotypic data currently being used for?

SPARK phenotypic data are currently being used in at least 100 research studies. These studies are investigating a variety of different topics relevant to ASD, including genetic and phenotypic correlations, comorbidities, sex differences, motor skills, special interests and beliefs about causes of ASD.

For example, one study used data from the SPARK cohort to examine medical and psychiatric comorbidities in adults with ASD². Two other related studies used data from the DCDQ to show that a large proportion of children with ASD who are enrolled in SPARK are at risk for motor impairment³ and, furthermore, that the risk increases as a function of social communication, functional, cognitive and language challenges and repetitive behavior severity⁴. Another recent study looked at the impact of COVID-19 on individuals with ASD and their caregivers, particularly as it relates to the disruption of medical services and worsening of symptoms⁵.

Can investigators recruit SPARK families for new research studies?

In addition to accessing phenotypic and genomic data, researchers can submit an application via SFARI Base to recruit SPARK participants into investigator-initiated research studies through the SPARK research matching program.

Applications are reviewed by a standing committee on a quarterly basis (application deadlines are March 31, June 30, September 30 and December 31). Researchers will receive further information about how to contact SPARK families once their application is approved.

Through a new initiative that aims to promote diversity, equity and inclusion in autism research, SPARK is now also providing support to research match studies that recruit Black or African American participants. Funding will provide per-person incentive (e-gift cards) for participation in online surveys or remote projects (e.g., phone interview, focus group).

More information about SPARK Research Match Diversity, Equity and Inclusivity request for applications can be found here.

The SPARK Recruitment Process Document provides answers to many frequently asked questions about the research matching program. 

Additional information

For more information, please contact collections@sfari.org.