Stakeholder Perspectives on Engaging with Cerebral Palsy Research Studies Following Onset of COVID-19 in the United States.

Joshi, Divya; Hill, Nayo; Hruby, Alexandra; Viswanathan, Shreya; Ingo, Carson; Roth, Heidi; Sukal-Moulton, Theresa

OBJECTIVE To investigate the effect of the COVID-19 pandemic on perspectives towards participation in cerebral palsy (CP) research. DESIGN An online survey with questions relating to the comfort levels of research participation was filled out by people who had CP or had a child with CP. SETTING The online survey was administered through Research Electronic Data Capture (REDCap) platform. PARTICIPANTS 233 individuals with CP (42.5%) or with a child with CP (57.1%) consented and at least partially completed the online survey (n=210 complete; n=23 partially complete). All participants resided in the United States. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Readiness to participate was analyzed in the context of the timepoint for research participation (TRP) during COVID-19 and whether or not the study offered direct benefits to participants. RESULTS Participants were consistently willing to participate sooner in studies that offered direct benefit than in those that did not. Adults responding for themselves had sooner timepoints for studies without direct benefit compared to parents answering for a child (p=0.030). GMFCS level, but not age or CP type, impacted the timepoint for studies without direct benefit (p=0.017). Personal values influenced selected timepoint for studies without direct benefit (p=0.007), while environmental factors impacted the timepoint for studies with direct benefit (p=0.002). Local COVID-19 incidence rates were not associated with timepoints for either research type, however respondents expected precautions to be taken if they chose to participate. CONCLUSION As the pandemic evolves, researchers should consider the perspectives of potential participants as well as ethical and safety factors when re-initiating in-person CP research.