title: The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example.
abstract: BACKGROUND
  Social media is increasingly being used as a means of recruiting participants, particularly for investigators whose areas of interest involve rare conditions or hard-to-reach populations. However, much of the literature to date has focused on paid advertisement recruitment.
  
  
  OBJECTIVE
  We used Lynch syndrome (LS), a rare hereditary cancer syndrome, as a model to demonstrate the successful partnership between researchers and a Web-based patient education and advocacy organization to facilitate participant recruitment.
  
  
  METHODS
  Recruitment was undertaken in partnership with Lynch Syndrome International (LSI), an advocacy organization with a strong social media presence. After LSI published our study information, participants followed up via email or phone call. Following prescreening and consent, interested and eligible participants were then sent a secure survey link.
  
  
  RESULTS
  Within 36 hours of a single Facebook post by the site administrators for LSI, over 150 individuals responded via phone or email. Sixty-five individuals were sent the survey link and 57 individuals completed the survey (88% response rate). Of note, these 57 individuals were geographically diverse within the Unites States, representing LS patients from 26 different states.
  
  
  CONCLUSIONS
  This approach has several advantages, including recruitment through a trusted source outside of a clinical setting, higher response rates, and cost-effectiveness with a small research team in a relatively short amount of time. Overall, social media recruitment with a trusted online partner can be highly effective in hard-to-reach clinical populations, such as patients with LS. However, this approach requires additional effort for eligibility screening.
authors.affiliation: Albany College of Pharmacy and Health Sciences, Albany, NY, United States.
authors.forename: Allison M
authors.identifier: http://orcid.org/0000-0002-5141-6095
authors.initials: AM
authors.lastname: Burton-Chase
authors.affiliation: Albany College of Pharmacy and Health Sciences, Albany, NY, United States.
authors.forename: Wendy M
authors.identifier: http://orcid.org/0000-0001-6363-5634
authors.initials: WM
authors.lastname: Parker
authors.affiliation: Albany College of Pharmacy and Health Sciences, Albany, NY, United States.
authors.forename: Kelsey
authors.identifier: http://orcid.org/0000-0001-7979-9959
authors.initials: K
authors.lastname: Hennig
authors.affiliation: Albany College of Pharmacy and Health Sciences, Albany, NY, United States.
authors.forename: Faith
authors.identifier: http://orcid.org/0000-0002-7999-9608
authors.initials: F
authors.lastname: Sisson
authors.affiliation: Advocacy Consultant, Vacaville, NY, United States.
authors.forename: Linda L
authors.identifier: http://orcid.org/0000-0002-1214-8876
authors.initials: LL
authors.lastname: Bruzzone
keywords: Lynch syndrome; data collection; participation rates; response rates; social media recruitment