SPARK

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 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)
  • 28,419 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

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

Community partners

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