Feasibility of Social Media Recruitment for Orofacial Cleft Genetic Research

Objective: This study assessed the feasibility of unpaid social media (SM) advertising to recruit participants affected with an orofacial cleft (OFC) for a genetic study. Design: This paper is a retrospective analysis of study recruitment based on enrollment and participation in a genetic study. Participants completed a series of enrollment surveys, provided saliva samples for genetic analysis, and completed post-participation feedback surveys. Participants: Participants signed up for the study following SM advertisement. Participants were eligible if: they or a minor in their care were affected by an OFC, the affected participant was not adopted, and the mother of the affected individual had not taken anti-seizure medication during pregnancy. 313 individuals completed initial screening surveys; 306 participants were eligible. 263 individuals completed all online surveys and were sent DNA sample kits. 162 subject DNA samples were returned. Main Outcome Measures: Success of recruitment was evaluated as number of enrolled participants and return rate for DNA samples. Results: 263 OFC-affected individuals completed the screening process in the first 12 months of recruitment. 162 of 263 affected subject DNA samples were returned within 12 months of sending, for a return rate of 62%. Approximately two-thirds (66.3%) of all returned samples were sent back within the first 6 weeks after receiving DNA kits. Conclusions: Unpaid SM advertising enabled the recruitment of a large cohort of participants in a short time (12 months). SM recruitment was inexpensive and effective for recruiting participants for a genetic study.