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Phenotypic data from 310,649 participants enrolled in SPARK, including 123,444 individuals with ASD, are now available to approved researchers. Genomic data (whole-exome sequencing and genome-wide genotyping data) are also available for 81,172 SPARK participants. Of these, 3,568 genomes and 34,164 exomes are from individuals with ASD.
The Simons Foundation Autism Research Initiative (SFARI) is pleased to announce that SPARK (Simons Foundation Powering Autism Research)1 has released new phenotypic data for use in research studies. Approved investigators can request the data via SFARI Base.
Phenotypic data from 310,649 individuals enrolled in SPARK are now available, including data from 123,444 individuals with autism spectrum disorder (ASD).
A summary of the available data is listed below:
Detailed medical and developmental history that are available as part of this data release include behavioral questionnaires such as the Adult Self Report (ASR), Developmental Coordination Disorder Questionnaire (DCDQ), Child Behavior Checklist (CBCL), Repetitive Behavior Scale-Revised (RBS-R), Social Communication Questionnaire (SCQ), Social Responsiveness Scale-2 Adult Self Report (SRS-2), and Vineland Adaptive Behavior Scales (Vineland-3). Also available for a subset of adults and children with ASD are Intelligence Quotient (IQ), clinical ASD and intellectual disability diagnosis confirmation, and Autism Diagnostic Observation Schedule (ADOS) data abstracted from medical records. Highlights of the most requested and latest measures are listed below:
This data release also contains a number of additional assessments such as an Area Deprivation Index (ADI) for each available proband.
An overview of the subgroups for whom phenotypic data are currently available, as well as the demographics of the SPARK sample, can be found here.
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. There is a six-month embargo on the genomic data, but there is no embargo on phenotypic data.
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.
SPARK phenotypic and genomic data are being used in more than 100 research studies. These studies are investigating a variety of different topics relevant to autism, including genetic risk factors, sex differences, and new assessments. Recent studies have contributed normative developmental data in autism2, and awareness of the mental health needs of autistic adults3. A large number of studies used data from the SPARK cohort for new insights into the genetics of autism4-9, including the discovery of new de novo variants, and inherited variants of moderate effect7, 8.
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 Match 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.
The SPARK Recruitment Process Document provides answers to many frequently asked questions about the research matching program.
For more information, please contact [email protected].
