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.
SPARK data
Phenotypic data from 46,603 individuals are currently available to approved researchers via SFARI Base. These individuals include:
- 6,309 trios (individuals with ASD and both biological parents)
- 15,302 children (under 18 years of age) with ASD
- 2,787 adults with ASD
- 12,717 males with ASD
- 3,254 females with ASD
- 7,610 unaffected siblings
- 682 enrolled twins, triplets and quadruplets
- 1,944 multiplex families
Genomic data are available for 469 trios.
Demographic and clinical information of participants in the initial data release is summarized below.
| Characteristic | Children (n = 15,302) |
Dependent adults (n = 1,654) |
Independent adults (n = 1,133) |
|---|---|---|---|
| Age enrollment in years, mean (SD) | 8.1 (4.1) | 23.0 (6.1) | 35.3 (12.4) |
| Sex at birth, n (%) | |||
| Male | 12,218 (79.9) | 1,231 (79.9) | 522 (46) |
| Female | 3,084 (20.2) | 333 (20.1) | 611 (53.9) |
| Age at diagnosis in years, mean (SD) | 4.2 (2.6) | 6.0 (5.3) | 20.5 (16.8) |
| Language level at enrollment, n (%) | |||
| No words / does not speak | 2,052 (13.4) | 185 (11.2) | – |
| Uses single words meaningfully | 1,961 (12.8) | 153 (9.3) | – |
| Phrase speech (3 words) | 2,542 (16.6) | 267 (16.2) | – |
| Uses longer sentences | 8,731 (57.1) | 1,047 (63.4) | – |
| Ever ASD services, n (%) | 13,300 (87.8) | 1,456 (88.7) | 616 (54.7) |
| Individualized educational plan for ASD, n (%) | 12,398 (81.8) | 1,506 (91.8) | 480 (42.6) |
| Social Communication Questionnaire | |||
| Total score, mean (SD) | 22.3 (7.0) | – | – |
| Meets cut off ≥ 11, n (%) | 14,757 (96.4) | – | – |
| Meets cut off ≥ 15, n (%) | 13,944 (91.1) | – | – |
To download PDF, click here.
The complete phenotypic battery of the cohort that is currently planned is listed below.
| Measure | Age (years) |
Participant groups |
|---|---|---|
| Basic Medical Screening Questionnaire | All | All |
| Social Communication Questionnaire-Lifetime | 2-18 | AI1, sibling |
| Developmental Coordination Disorder Questionnaire | 5-15 | AI |
| Background History Form (ASD child, Non-ASD Sibling, ASD Adult) | All | AI, sibling |
| Vineland Adaptive Behavior Scale 3rd Edition (VABS-III) Parent/Caregiver Rating Form | All | AI, sibling |
| Survey of Previous Evaluations | All | AI, sibling |
| Social Responsiveness Scale-2 (SRS-2) School Age | 4-18 | AI, sibling |
| Social Responsiveness Scale-2 (SRS-2) Adult | 19+ | AI, sibling, parents |
| Child Behavior Checklist (CBCL) 1.5-5 and 6-18 | 1-18 | AI, sibling |
| Adult Behavior Checklist (ABCL) | 19+ | AI |
| Medication History | All | AI |
| Medical History | All | AI, sibling, parent2 |
| Education & Intervention History | All | AI |
| Repetitive Behavior Scale-Revised (RBS-R) | 3-18, 19+ dependant | AI |
| Aberrant Behavior Checklist (ABC) | 6-18, 19+ dependant | AI |
| Modified Checklist for Autism in Toddlers (M-CHAT) | 16-30 mos | AI, sibling |
| Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist (CSBSDP) | 6-72 mos | AI, sibling |
| Broad Autism Phenotype Questionnaire (BAPQ) | 19+ | AI, sibling, parents |
| Quality of life | All | AI, parent |
______________
1 AI indicates individual with ASD (including multiplex family members)
2 Administered to family members with a significant genetic finding
To download PDF, click here.
Clinical sites
-
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.) -
Emory University
(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
Community partners
-
Autism Science Foundation
(New York, NY) -
Autism Society of America
(Washington, DC) -
Autism Speaks
(New York, NY) -
GRASP
(New York, NY)