Motivators and barriers to neurodevelopmental research enrolment

Purpose: Participant recruitment for studies investigating neurodevelopmental conditions can be difficult, limited, and resource intensive. In this study, caregivers were surveyed to learn about the factors influencing their decision to enroll their neurodivergent child in research.Method: Data were collected through an online survey from caregivers of neurodivergent children who were signing up for a research recruitment database (n = 46).Results: Participants indicated the most important motives were to help achieve better outcomes for other children and to contribute to scientific understanding. Personal curiosities, such as the caregiver or child learning more about their condition, were identified as important for some parents. The most influential barrier to enrollment noted by participants was a heightened possibility of a significant negative side effect.Conclusion: These findings provide essential insight that can inform study design and associated research support that could overcome barriers and ensure families are aware of the benefits of participating in research.