Participant Characteristics Predicting Response to New Research Opportunities Offered By SPARK Research Match

Background: Simons Foundation Powering Autism Research for Knowledge (SPARK) is a collaborative, online study that enrolls individuals with a professional diagnosis of autism spectrum disorder (ASD) and their family members into an autism research cohort. One of SPARK’s central features is “research match” (RM), a research platform that enables researchers to recruit, cost-free, potential study participants from the SPARK cohort. Participants are notified about studies by email and can indicate interest in the study by clicking a weblink. To date, 20+ studies have used RM and 20,000+ SPARK participants have responded to at least one study invitation. It is unknown how individual participant characteristics, such as demographics and prior engagement in SPARK, impact these response rates.

Objectives: Evaluate response rates by demographic and enrollment factors

Methods: Eleven studies (5 online and 6 in-clinic) that used RM during 06/2017-11/2018 were selected for analysis. All studies recruited children and/or dependent-adults with ASD. Participants who received at least one invitation for the studies were included in the sample. For families invited to more than one study, each study was considered as a separate opportunity to respond. Participants who clicked on either the “interested” or “not interested” weblink were classified as responders, while participants who selected neither were non-responders. Demographic characteristics and other SPARK-related factors were indexed to the dependent with ASD.

Results:

• There were 34,823 recruitment opportunities for the eleven selected studies
• Online studies: 33,477 recruitment opportunities; 16,102 (48.1%) response rate
• In-clinic studies: 1,346 recruitment opportunities; 423 (31.4%) response rate
• Saliva kit return and previous SPARK study protocol survey completion predicted response for both study types
• Participants were more likely to respond to either type of study if their time since enrollment was <9 months
• Clinical site affiliation was associated with higher response to in-clinic studies; however, non-affiliated participants were more likely to respond to online studies
• Age of the child with ASD was not associated with response for in-clinic studies, but parents of children <10 years were more likely to respond to online research opportunities
• No difference in response rate for child/dependent-adult gender
• See Table 1 for participant characteristics and response rates, and Table 2 for results of multiple logistic regressions

Conclusions: SPARK research match has been successful in engaging a range of SPARK participants in new research studies. Certain participant characteristics predict response to invitations about new research in general, such as previous engagement with SPARK (e.g. saliva kit return). These participants have already demonstrated willingness to engage with SPARK after registration. We also identified differences between online and in-clinic studies. Clinical site-affiliated-participants may be more likely to respond to in-clinic studies due to the pre-existing relationship with the local site. Non-affiliated participants’ sole method of interaction with SPARK is online, and may indicate a general preference for how to participate in research. Participants with ASD of all ages may be seeking direct benefit from in-clinic studies, while parents of younger children may be more willing to participate in a broader range of autism research due to recency of diagnosis.