SPARK Research Match: A Platform to Accelerate Research By Matching SPARK Participants with New Autism Studies

Poster Presentation
Saturday, May 12, 2018: 11:30 AM-1:30 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
C. W. Lehman1, J. K. Law2, J. Toroney2, B. Vernoia1, P. Feliciano1 and W. K. Chung1, (1)Simons Foundation, New York, NY, (2)Medical Informatics, Kennedy Krieger Institute, Baltimore, MD
Background: The Simons Foundation Powering Autism Research for Knowledge (SPARK) is a collaborative, online study that enrolls individuals with a professional diagnosis of autism and their family members into an autism research cohort. All participants consent to be contacted about future autism research studies. With over 90,000 engaged participants and over 30,000 with ASD, SPARK offers an unprecedented opportunity to facilitate autism research broadly by assisting researchers with study recruitment – one of the major challenges in conducting clinical studies (Denhoff 2015). SPARK features a research match (RM) process that supports external study data collection to facilitate research recruitment, requires bi-directional data sharing to enhance both SPARK data and researchers’ studies and to minimize participant burden, and captures participant and researcher feedback to inform future RM studies.

Objectives: (1) Describe the research match process in SPARK (2) Report outcomes for completed studies

Methods: The RM process is divided into three stages: application, launch, and study close. All investigators seeking to recruit SPARK participants complete an application. Proposed studies are reviewed by the RM committee, comprised of research and recruitment experts, and scored based on research and engagement merit. During the pre-launch phase, the RM team works with the investigator to draft recruitment materials that fit the standard SPARK communications and to modify the study consent to allow for bi-directional data-sharing. For internet-based studies, SPARK has developed the infrastructure for online surveys and databases. During the launch phase, potentially eligible SPARK participants are notified by email about the new study. Participants can ‘opt-in’ to receiving additional information. For online studies, the RM platform supports electronic consent, data collection, and incentive distribution. For in person studies, participants complete an online data authorization and provide updated contact information, which are shared with the external study team for follow-up and study team contact. After study launch, response rates are closely monitored and adjusted to balance recruitment goals and participant experience. The final stage includes preparation and transfer of study data set (if applicable) and a summary RM report for the external research team with recruitment metrics. Participant and researcher feedback are captured at the close of the project. The SPARK team also works with researchers to prepare aggregate study results for communication to participants.

Results: As of October 2017, SPARK has received 10 applications. To date, 4 RM studies have launched (2 online, 1 in person, and 1 other) and over 10,000 SPARK participants were invited to participate in at least one RM study. Data from these initial studies demonstrated response rates as high as 60% and high participant satisfaction with the process and study topics. Implications for study recruitment and satisfaction based on project type (e.g. survey vs in person) will be presented. Additionally, feedback data from researchers and participants will be shared.

Conclusions: Overall, the research match process in SPARK benefits both researchers and participants by facilitating high quality research to help address important questions about autism, with the goal of improving the understanding, diagnosis, and treatment of autism and related disorders.