Feasibility of Social Media Recruitment for Orofacial Cleft Genetic Research

Abstract 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.