Striving for Equity in Cystic Fibrosis Research: Perspectives from Black and Hispanic/ Latino(a) Individuals with CF.

Abstract

Background: Black and Hispanic people with cystic fibrosis (PwCF) experience worse health outcomes. Health disparities are exacerbated by clinical research that does not adequately represent the diversity of the CF population.

Research questions: How do Black/African American and Hispanic/Latino(a) PwCF perceive clinical research? What are the barriers and facilitators to participation in research? Are there viable solutions to improve inclusion?

Study design and methods: Semi-structured, individual interviews were conducted with PwCF aged ≥18 years who identify as Black/African American race and/or Hispanic/Latino(a) ethnicity. Participants were recruited from six geographically diverse CF centers and through CF Foundation Community Voice, a CF community partner organization. The interview guide was created by a committee that included minoritized PwCF, research coordinators, and physician-scientists. Thematic analysis with inductive and deductive coding was used to analyze interview transcripts.

Results: Twenty PwCF were interviewed from 2024 to 2025. Drawing from a race-conscious adaptation of the Behavioral Model for Vulnerable Populations, we used domains of predisposing, need-based, and healthcare environment factors, as well as emergent themes relating to information and support needs. Participants discussed barriers to research participation that included narrow eligibility criteria (e.g., genotype requirements, health status) and logistical challenges such as time and cost. PwCF described a sense of isolation as persons of color with CF, which impacted sense of trust in CF care and research studies. They highlighted that racialized experiences, especially doubt surrounding their CF diagnosis, significantly impact willingness to participate. Solutions center around providing community support to address feelings of isolation and information needs to provide transparency about study design and intent.

Interpretation: Participation in clinical research is strongly influenced by an interplay of social, cultural, health, and systemic factors. Solutions to improve inclusion in trials center the needs of marginalized communities across all phases of study design and implementation.