Evidence map›Paper›PMID 39606463›Full record

ArticleResearch square2024

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

Tijana Milinic, Nora Burdis, Eliana Gill, Patricia Burks, Mary Elizabeth Jarosz, Amy J Hoffman, Siddhartha G Kapnadak, Kathleen J Ramos, Christopher H Goss

Abstract readPreprint
In one paragraph

Article in Research square, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

9 authors.

Tijana MilinicUniversity of Washington.
Nora BurdisUniversity of Washington.
Eliana GillUniversity of Washington.
Patricia BurksCystic Fibrosis Foundation.
Mary Elizabeth JaroszCystic Fibrosis Foundation.
Amy J HoffmanSeattle Children's Research Institute.
Siddhartha G KapnadakUniversity of Washington.
Kathleen J RamosUniversity of Washington.
Christopher H GossUniversity of Washington.

Funding

Institute of Translational Health SciencesUL1TR000423 · NCATS · UNIVERSITY OF WASHINGTON · PI DISIS, MARY L. · 2012 to 2016
$49.4M
Translational Research Center to Expedite Novel Therapies in Cystic FibrosisP30DK089507 · NIDDK · SEATTLE CHILDREN'S HOSPITAL · PI Christopher Hooper Goss · 2010 to 2026
$21.4M
RESPIRATORY RESEARCH TRAINING PROGRAMT32HL007287 · NHLBI · UNIVERSITY OF WASHINGTON · PI Kristina Anne Crothers, David J. Horne · 1985 to 2026
$16.7M
A Phase 1b, Multi-center Study of IV Gallium Nitrate in Patients with Cystic Fibrosis who are colonized with Nontuberculosis Mycobacterium (The ABATE Study).R01FD006848 · FDA · SEATTLE CHILDREN'S HOSPITAL · PI Christopher Hooper Goss, JERRY A NICK · 2020 to 2026
$3.1M
Preparation for lung transplant discussions and decisions among people with cystic fibrosisR01NR020470 · NINR · UNIVERSITY OF WASHINGTON · PI Kathleen Jessica Ramos · 2023 to 2026
$2.9M
FDA HHS R01 FD006848NCATS NIH HHS UL1 TR000423NHLBI NIH HHS T32 HL007287NIDDK NIH HHS P30 DK089507NINR NIH HHS R01 NR020470
6 · The paper itself

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 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.

Indexed as

clinical trial recruitmentcystic fibrosisdisparitiesequity

Identifiers

PMID39606463
PMCPMC11601850

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.