JMIR Publications

ABSTRACT

Background:

Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders caused by fragile lax collagen. Current EDS research lacks racial and ethnic diversity and therefore generalizability to the global EDS population. The lack of diversity may be associated with the complexities of conducting a large international study on an underdiagnosed condition. Also, there is a lack of healthcare providers who can diagnose and conduct research on EDS outside of countries comprised of predominately White populations. The global reach of social media may facilitate recruitment of a large global population as well as groups that have been left out of EDS research.

Objective:

This study aims to discuss challenges, strategies and outcomes of recruiting a large sample of people with EDS online, for a study that examined dyspareunia (painful sexual intercourse).

Methods:

Social media-based online recruitment for a cross-sectional survey examining dyspareunia was used. Inclusion criteria were: 1) over 18 years old, 2) assigned female at birth, and 3) diagnosed with EDS. Recruitment materials were posted in EDS Facebook support groups and on Twitter, now called X, from June 1st to June 25th, with participants entering the survey until July 6th, 2019.

Results:

166 EDS Facebook support groups were identified, 104 gave permission for the principal investigator (PI) to join, 90 approved posting, and the survey was posted in 54. Of the support groups posted in, 30 were globally focused and not tied to any specific country or region; 21 were for people residing in the United States (US), and 3 were for people residing outside of the US. Recruitment materials were posted on Twitter with the hashtag #EDS. 1,599 people accessed the survey and 1,178 people were eligible and consented. 1,174 participants were recruited from Facebook and 4 from Twitter. The average age of participants was 38.6 + 11.7 years. Participants were predominantly White (92.8%) and non-Hispanic (91.9%). Participants were recruited from 29 countries, with 78.5% from the US and 10.8% from Great Britain.

Conclusions:

Although our recruitment method was successful at recruiting a large sample in a short amount of time, the sample was predominantly White from North America and Europe. To recruit more diverse samples, EDS investigators may need to focus on connecting with global support groups, namely support groups outside of the US and Europe, examining which social media platforms are commonly used in different regions of the world, and translating study materials into different languages. A larger obstacle to recruiting diverse samples may be the lack of healthcare providers that can diagnose EDS outside of the US and Europe, making the pool of potential participants small. There needs to be more healthcare providers that diagnose and treat EDS in countries that are predominantly people of color along with research that targets these populations.