Feasibility of Social Media Recruitment for Orofacial Cleft Genetic Research

Abstract

Objective: This study assessed the feasibility of unpaid social media advertising to recruit participants affected with an orofacial cleft (OFC) for a genetic study. Design: This is a retrospective analysis of recruitment based on enrollment and participation in a genetic study. Participants completed a series of enrollment surveys, provided saliva samples, and completed postparticipation feedback surveys. Participants: 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 antiseizure medication during pregnancy. Main Outcome Measures: Success of recruitment was evaluated from the number of enrolled participants and sample return rate. Results: In the first 12 months of recruitment, 313 individuals completed initial screening surveys; of these, 306 participants were eligible. A total of 263 individuals completed all online surveys and were sent DNA sample kits. One hundred sixty-two 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 social media advertising enabled the recruitment of a large cohort of participants in a short time (12 months). The resulting study population was limited in racial and ethnic diversity, suggesting that other recruitment strategies will be needed for studies seeking specific demographic or socioeconomic groups. Nonetheless, social media recruitment was efficient and effective for recruiting participants for a genetic study in comparison to traditional clinic-based modes of recruitment.

Be in the Digital Room Where it Happens, Part I: Tweeting & Technology for Career Development

“…Web-based recruitment is both cost-effective and more efficient than traditional recruitment methods. 24 , 29 , 30 SoMe can facilitate study participant recruitment by reaching target populations. Although online support groups for rare diseases are discussed later in this article, their use in study recruitment is relevant to the current topic.…”

“…Although SoMe-based recruitment can facilitate both accessibility and geographic diversity, additional recruitment methods should be used to insure phenotypic, racial, and ethnic diversity in a study population. 30 , 69 , 70 Investigators should also be mindful of the challenges SoMe may pose in protecting study participant's identities, maintaining blinding, and retention of participants. 71 …”

“…Hospital systems use SoMe to promote brand presence, patient education, and reputation scores. 5 An estimated 25–65% of medical professionals are using SoMe 6 – 10 for clinical outreach, 11 – 13 career development, 8 , 14 – 21 research, 15 , 22 – 33 education, 34 – 44 and advocacy efforts. 45 – 59 However, there are misconceptions, anecdotal stories, and fears surrounding a medical professional's use of SoMe use, which can foster inappropriate use, skepticism, and criticism.…”

“…Hospital systems use SoMe to promote brand presence, patient education, and reputation scores. 5 An estimated 25-65% of medical professionals are using SoMe [6][7][8][9][10] for clinical outreach, [11][12][13] career development, 8,[14][15][16][17][18][19][20][21] research, 15,[22][23][24][25][26][27][28][29][30][31][32][33] education, [34][35][36][37][38][39][40][41][42][43][44] and advocacy efforts. [45][46][47][48][49][50][51][52][53]…”