Carolina SPARK: Carolina Site for the SFARI National Autism Cohort
Project Description:
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 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. De-identified genetic data is expected to be available later this year.
Families who are interested in learning more about SPARK or in participating can visit SPARKforAutism.org.
Core Function(s):
Performing Research or Evaluation, Developing & Disseminating Information
Area of Emphasis
Health-Related Activities
Target Audience:
Students/Trainees (long or intermediate trainees), Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers
Unserved or Under-served Populations:
Specific Groups
Primary Target Audience Geographic Descriptor:
Another State, Single-County, Mulit-County, State, Regional, National
COVID-19 Related Data:
N/A
