ASD Community Interest in an Online National Autism Cohort, Incentives for Participation, Engagement Resources, and Research Topics of Interest

Background:  

To further understand the genetic and environmental factors that increase autism risk and to advance the field toward improved treatments, research studies involving thousands of individuals with autism spectrum disorder (ASD) are needed. While a number of large autism cohorts exist, no single nationwide cohort that combines online accessibility, ability to recontact, and the collection of genomic, environmental, and longitudinal behavioral and medical information on all participants is available to the scientific research community. SFARI is launching SPARK to recruit, engage and retain 50,000 individuals with ASD and their family members. 

Objectives:  

The aims of the current study are to gauge the ASD community’s interest in participating in SPARK, to evaluate  enablers to participation and engagement, including the extent to which families would be interested in receiving individual genetic results specific to autism from the study, and research topics of interest. 

Methods:  

An anonymous online survey was distributed to a total of 16,031 research participants of the Interactive Autism Network (IAN) over 5 weeks. Respondents were asked if they were interested in participating in a national autism cohort and in what ways. They were also asked to identify incentives for participation, resources that would enhance participation, and about their interest in receiving personal genetic information about genetic causes of autism in their family.

Results:  

A total of 943 parents/legal guardians and 98 adults with ASD completed the survey. 79% of parents/guardians and 80% of adults with ASD reported that they would be interested in participating in a national autism cohort. While 71% of respondents reported that they would be willing to participate online, 28% also reported a willingness to participate in person. When asked to select features that would increase interest in participating, both parents/guardians (69%) and individuals with autism (60%) indicated that they were interested in return of individual genetic results about the cause of their ASD. The most frequently requested resources were access to autism-specific educational apps and websites (57%) and access to articles about ASD research (51%), for parents/guardians and adults, respectively. Both groups indicated interest in participating in a genetic research study that would determine if their child/they had a known genetic cause of autism (71%, 73%, respectively). Overall, topics of greatest interest were related to community services and programs for individuals with ASD (77%) for parents/legal guardians and how autism impacts the brain (81%) for adults. 

Conclusions:  

Findings from this study indicate that among survey participants there is significant interest in participating in an online national autism cohort. There was strong interest in return of individual genetic results. Respondents reported a high level of interest in participating in research. SPARK aims to fill this knowledge gap and stimulate more robust engagement and participation from a broad and diverse sample of the autism community in clinical research.