JMIR Publications

ABSTRACT

Background:

Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are genetically mediated life-threatening reactions that in adults are usually caused by a medication. These genetic associations promise an opportunity for pre-prescription screening and prevention. However, the study of genetic risk and long-term sequelae of SJS/TEN across racially diverse populations has been hampered by many factors that include its rarity, social disparities, and trust in healthcare and providers, which impact access to hospital and clinic-based research studies.

Objective:

To explore the utility of multiple social media and web-based search tools with the goal of increasing numbers, diversity, and inclusivity of study enrollment.

Methods:

The SJS survivor study is a community-based retrospective cohort study which remotely recruits drug-induced SJS/TEN survivors in the United States to help determine genetic risk and long-term outcomes. Baseline recruitment included advertisements on the SJS Foundation website and American Burn Association newsletter. Social media ads were later introduced by Vanderbilt University Medical Center (VUMC) Facebook and Instagram accounts, where posts were created using flyers and 60-second SJS/TEN survivor video vignettes. Finally, a national Google Ad campaign was launched. We measured the change in registration of both study interest and effectiveness of implementation of specific social media and web-based search tools before and after their implementation.

Results:

Since the introduction of social media and Google Ads in March 2022, we report a 48.6% increase in enrollment overall and a 289.5% increase in participation interest. We noticed the ads were inclusive to all age groups and saw a more even age distribution of enrolled participants from 18 through 74 years old was seen, with an average of 15% enrolled into each age category. The most significant increase in both enrollment and diversity of responses came from Google Ads with a total of 201 expressions of interest, 33% of which self-identified as non-White and 56 participants enrolled.

Conclusions:

Social media and web-based search tools differ in their enrollment effectiveness. In this community-based study, social media and web-based strategies increased numbers, diversity, and inclusion of enrollment and show promise as tools to increase both diversity and enrollment in rare diseases such as SJS/TEN.