Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials
Abstract 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) perspec...
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BMC
2025-07-01
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| Series: | BMC Pulmonary Medicine |
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| Online Access: | https://doi.org/10.1186/s12890-025-03707-9 |
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| author | Tijana Milinic Nora Burdis Eliana Gill Patricia Burks Mary Elizabeth Jarosz Amy J. Hoffman Siddhartha G. Kapnadak Kathleen J. Ramos Christopher H. Goss |
| author_facet | Tijana Milinic Nora Burdis Eliana Gill Patricia Burks Mary Elizabeth Jarosz Amy J. Hoffman Siddhartha G. Kapnadak Kathleen J. Ramos Christopher H. Goss |
| author_sort | Tijana Milinic |
| collection | DOAJ |
| description | Abstract 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 (n = 20, 91%) 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 (n = 17, 35%). 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 (n = 31, 47%). Among all levels of experience, 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. This study highlights the importance of trusted, culturally competent research teams and underscores the importance of language accessibility in recruitment in clinical trials. |
| format | Article |
| id | doaj-art-6a2f29fddfe9423e8fa77c82daa1a69e |
| institution | DOAJ |
| issn | 1471-2466 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pulmonary Medicine |
| spelling | doaj-art-6a2f29fddfe9423e8fa77c82daa1a69e2025-08-20T03:03:23ZengBMCBMC Pulmonary Medicine1471-24662025-07-012511710.1186/s12890-025-03707-9Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trialsTijana Milinic0Nora Burdis1Eliana Gill2Patricia Burks3Mary Elizabeth Jarosz4Amy J. Hoffman5Siddhartha G. Kapnadak6Kathleen J. Ramos7Christopher H. Goss8Division of Pulmonary, Critical Care, and Sleep Medicine, Dept of Medicine, University of WashingtonDivision of Pulmonary, Critical Care, and Sleep Medicine, Dept of Medicine, University of WashingtonDivision of Biobehavioral Nursing and Health Informatics, Dept of Nursing, University of WashingtonCystic Fibrosis FoundationCystic Fibrosis FoundationSeattle Children’s Research InstituteDivision of Pulmonary, Critical Care, and Sleep Medicine, Dept of Medicine, University of WashingtonDivision of Pulmonary, Critical Care, and Sleep Medicine, Dept of Medicine, University of WashingtonDivision of Pulmonary, Critical Care, and Sleep Medicine, Dept of Medicine, University of WashingtonAbstract 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 (n = 20, 91%) 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 (n = 17, 35%). 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 (n = 31, 47%). Among all levels of experience, 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. This study highlights the importance of trusted, culturally competent research teams and underscores the importance of language accessibility in recruitment in clinical trials.https://doi.org/10.1186/s12890-025-03707-9EquityCystic fibrosisClinical trial recruitmentDisparities |
| spellingShingle | Tijana Milinic Nora Burdis Eliana Gill Patricia Burks Mary Elizabeth Jarosz Amy J. Hoffman Siddhartha G. Kapnadak Kathleen J. Ramos Christopher H. Goss Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials BMC Pulmonary Medicine Equity Cystic fibrosis Clinical trial recruitment Disparities |
| title | Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials |
| title_full | Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials |
| title_fullStr | Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials |
| title_full_unstemmed | Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials |
| title_short | Research coordinators’ perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials |
| title_sort | research coordinators perspectives on recruitment of minoritized people with cystic fibrosis into clinical trials |
| topic | Equity Cystic fibrosis Clinical trial recruitment Disparities |
| url | https://doi.org/10.1186/s12890-025-03707-9 |
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