Research Coordinators' Perspectives on Recruitment of Minoritized People with Cystic Fibrosis into Clinical Trials.

BACKGROUND

Clinical trials in cystic fibrosis (CF) disproportionately over-represent non-Hispanic, White individuals. Barriers and facilitators to enrolling racially and ethnically minoritized individuals with CF are not well understood. This study explored research coordinator (RC) perspectives on recruitment and enrollment of minoritized people with CF (PwCF) into clinical trials.

METHODS

A cross-sectional survey was administered to RCs in the CF Therapeutics Development Network (CF TDN), eliciting perceived barriers and facilitators to inclusion of minoritized PwCF in clinical research. Respondents were categorized based on their self-reported experience discussing and successfully enrolling minoritized PwCF into clinical trials.

RESULTS

Among 48 respondents, the majority (n = 31, 64%) had little to no experience discussing CF clinical trials with minoritized PwCF. Respondents who had a moderate or great deal of experience identified that having a trusted clinical team member first introduce the study to PwCF as the most common strategy for recruitment. Experienced respondents also identified the importance of having team members who speak the same language or are the same culture as the minoritized PwCF. Respondents who had little to no experience successfully enrolling minoritized PwCF into clinical trials cited low numbers of minoritized patients at their study center as an important consideration. All respondents emphasized language barriers in enrollment including need for adequate translation services and printed materials in the PwCF's primary language.

CONCLUSION

Our study identified modifiable barriers that may be addressed at the level of trial design and study center.