SPARK

SPARK (Simons Foundation Powering Autism Research) 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 31 university-affiliated research clinics in 26 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, 4 more sites began in April 2017 and the remaining sites in March 2019.

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.

SPARK data

Phenotypic Data

Phenotypic data from 372,386 individuals (including more than 100,000 individuals with ASD) are currently available to approved researchers via SFARI Base. These individuals include:

Total number of individuals: 372,386
Total number of female probands: 45,296
Total number of adults with ASD: 30,385
Total number of children under 18 with ASD: 123,213
Total number of male probands: 108,476
Total number of unaffected siblings: 54,976
Total number of enrolled twins, triplets, and quadruplets: 8,984
Total number of multiplex families: 25,116
Total number of ASD particpants with unknown age: 174

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

Genomic data is available for 116,693 SPARK participants, specifically 106,744 (including 44,304 with ASD) with whole exome sequencing and 12,519 (including 3,575 with ASD) with whole genome sequencing. A total of 2,570 individuals have both. These data are available to approved researchers via SFARI Base.

There will be a publication embargo for 6 months after all genomic data is released that will prohibit submission of manuscripts for publication.

Results from a pilot study ‬that genetically characterized 457 families enrolled in SPARK is available here:‬

Feliciano P. et al. npj Genom. Med. 4, 19 (2019) PubMed

Clinical sites

Baylor College of Medicine, Texas Children's Hospital
(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: So Hyun Kim, Ph.D. )
Children's Hospital of Philadelphia
(Investigators: Robert Schultz, Ph.D. and Juhi Pandey, Ph.D.)
Children’s Specialized Hospital
(Investigators: Jill Harris, Ph.D. and Malia Beckwith, M.D.)
Cincinnati Children's Hospital Medical Center
(Investigator: Rebecca C. Shaffer, Psy.D)
Emory University and Marcus Autism Center
(Investigators: Cheryl Klaiman, Ph.D. and 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.)
The Rose F. Kennedy Children’s Evaluation & Rehabilitation Center at Montefiore
(Investigator: Lisa Shulman, M.D.)
Rush University Medical Center
(Investigators: Latha Soorya, Ph.D. and Cesar Ochoa-Lubinoff, M.D.)
Stanford University
(Investigator: Antonio Hardan, M.D.)
Stony Brook University
(Investigator: Matthew Lerner, Ph.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 and Southwest Autism Research & Resource Center
(Investigator: Karen Pierce, Ph.D.)
University of Colorado, Denver
(Investigator: Cordelia Robinson Rosenberg, Ph.D.)
The University of Iowa
(Investigator: Jacob Michaelson, Ph.D.)
University of Miami
(Investigator: Melissa Hale, Ph.D.)
University of Michigan
(Investigator: Costanza Colombi, Ph.D.)
University of Minnesota
(Investigator: Suma Jacob, M.D., Ph.D.)
University of Mississippi Medical Center
(Investigator: Dustin E. Sarver, Ph.D.)
University of Missouri, Thompson Center for Autism and Neurodevelopmental Disorders**
(Investigator: Kerri P. Nowell, Ph.D.)
The University of North Carolina at Chapel Hill**
(Investigators: Joseph Piven, M.D. and Gabriel Dichter, Ph.D.)
The University of Utah Child Development Program
(Investigator: Paul Carbone, M.D.)
University of Washington**
(Investigator: Jennifer Ann Gerdts, Ph.D.)
Vanderbilt University Medical Center
(Investigator: Zachary Warren, Ph.D.)
Yale University
(Investigators: Roger Jou, M.D., Ph.D. and Abha Gupta, M.D., Ph.D.)
** Pilot sites