SPARK (Simons Foundation Powering Autism Research for Knowledge) is an autism research initiative that aims to recruit, engage and retain a community of 50,000 individuals with autism and their family members living in the U.S.
Participation in this cohort involves the contribution of medical and behavioral information, mailing in saliva for genetic analysis, the potential option to have genetic findings related to autism returned, and the option to be recontacted to participate in future research studies. This community of engaged participants will provide researchers with an efficient way to invite individuals to participate in their research.
This research project is centrally coordinated by the Simons Foundation Autism Research Initiative (SFARI) and includes collaboration with 25 university-affiliated research clinics in 22 states across the U.S. SFARI launched a pilot phase of the project in December 2015 with three clinical sites. An additional 18 sites began recruiting individuals with autism and their families in April 2016 and the remaining sites began recruitment in April 2017.
In addition, numerous national and local autism community organizations across the U.S. are partnering with SFARI to help recruit participants and spread the word about this landmark study.
Researchers can request de-identified phenotypic and genetic data and submit an application to recruit SPARK participants into new autism research studies through SFARI Base. The SPARK Recruitment Process Document provides answers to many frequently asked questions.
Families who are interested in learning more about SPARK or in participating can visit SPARKforAutism.org.
Phenotypic data from 88,885 individuals are currently available to approved researchers via SFARI Base. These individuals include:
- 12,661 trios (individuals with ASD and both biological parents)
- 29,276 children (under 18 years of age) with ASD
- 4,938 adults with ASD
- 23,867 males with ASD
- 6,250 females with ASD
- 14,346 unaffected siblings
- 1,182 enrolled twins, triplets and quadruplets
- 3,883 multiplex families
A summary of the phenotypic data that is available for these participants can be accessed here.
A summary of the demographic and clinical information for these participants is available here.
Genomic data (whole-exome and genome-wide genotyping data) are currently available for 469 trios.
Whole-exome and genome-wide genotyping data for an additional 4,500 trios are expected to be available in October 2018. Whole-genome sequencing data from approximately 400 trios will also be available later this year. There will be a publication embargo for 6 months after all genomic data is released that will prohibit submission of manuscripts for publication.
Baylor College of Medicine
(Investigator: Robin Goin-Kochel, Ph.D.)
Boston Children's Hospital
(Investigators: Lisa Prock, M.D. and Mustafa Sahin, M.D., Ph.D.)
Center for Autism and the Developing Brain
(Investigator: Catherine Lord, Ph.D.)
Children's Hospital of Philadelphia
(Investigators: Robert Schultz, Ph.D. and Juhi Pandey, Ph.D.)
Cincinnati Children's Hospital Medical Center
(Investigator: Craig Erickson, M.D.)
(Investigator: Opal Ousley, Ph.D.)
Geisinger Autism & Developmental Medicine Institute
(Investigator: Christa Lese Martin, Ph.D.)
Kennedy Krieger Institute
(Investigator: Ericka Wodka, Ph.D.)
Maine Medical Center Research Institute
(Investigator: Matthew Siegel, M.D.)
Medical University of South Carolina
(Investigator: Laura Carpenter, Ph.D.)
Nationwide Children's Hospital
(Investigator: Eric Butter, Ph.D.)
Oregon Health and Science University
(Investigators: Eric Fombonne, M.D. and Brian O'Roak, Ph.D.)
Rush University Medical Center
(Investigators: Latha Soorya, Ph.D. and Cesar Ochoa-Lubinoff, M.D.)
University of California, Davis MIND Institute
(Investigators: Leonard Abbeduto, Ph.D. and David Amaral, Ph.D.)
University of California, Los Angeles
(Investigator: Amanda Gulsrud, Ph.D.)
University of California, San Diego
(Investigator: Karen Pierce, Ph.D.)
University of Colorado, Denver
(Investigator: Cordelia Robinson Rosenberg, Ph.D.)
University of Iowa
(Investigator: Jacob Michaelson, Ph.D.)
University of Miami
(Investigator: Melissa Hale, Ph.D.)
University of Minnesota
(Investigator: Suma Jacob, M.D., Ph.D.)
University of Mississippi Medical Center
(Investigator: Robert Annett, Ph.D.)
University of Missouri, Thompson Center for Autism and Neurodevelopmental Disorders**
(Investigator: Stephen Kanne, Ph.D.)
University of North Carolina at Chapel Hill**
(Investigators: Joseph Piven, M.D. and Gabriel Dichter, Ph.D.)
University of Washington**
(Investigator: Raphael Bernier, Ph.D.)
Vanderbilt University Medical Center
(Investigator: Zachary Warren, Ph.D.)
** Pilot sites