From delays in diagnosis to lower representation in clinical trials, research has shown that individuals with cystic fibrosis from underrepresented communities often experience health inequities, facing unique challenges that may contribute to poorer health outcomes.
In 2023 the CF Foundation established the Health Equity Team Science Awards for the first time, providing support for research projects that have the potential to advance health equity. The Foundation also created a Health Equity Supplement for our Clinical Research Award and Clinical Pilot and Feasibility Award. This is part of the Foundation’s commitment to address systemic barriers that lead to health inequities. These awards are given to projects aiming to improve our understanding of or have a positive impact on identified barriers to optimal health outcomes for all people with CF related to race and ethnicity, sexual orientation or gender, or socioeconomic status.
Recipients of the Foundation’s health equity awards include:
ADVOCATE-CF-NBS: Assessing Adverse Social and Structural Determinants of Health in CF Newborn Screening (Clinical Research Award)
Research has shown that infants from racial and ethnic minority groups are less likely to benefit from the better health outcomes associated with early diagnosis of CF through newborn screening (NBS). The objective of ADVOCATE-CF-NBS is to reduce disparities in CF newborn screening through identifying best practices and barriers to timely evaluation and treatment of infants with an abnormal CF NBS. Hypothesizing that structural and social determinants of health contribute to disparities in CF newborn screening, the project identified two aims:
- Determining whether states who have increased the number of CFTR variants on their NBS panels have seen improved diagnosis or more timely evaluation of CF in infants from racial and ethnic minority groups (and whether states with expanded panels are still missing variants)
Identify factors associated with delayed diagnosis to see if social determinants of health, such as access to transportation, might disproportionately contribute to health disparities
This project is led by Clement Ren, MD, MBA, director of the Cystic Fibrosis Center at Children’s Hospital of Philadelphia.
HEAL-CF: Genome-sociome informed risk (G-SIR) prediction tools for enhanced clinical management and promotion of health equity across the lifespan (HEAL) (Clinical Research Award)
While whole genome sequencing is a powerful tool for uncovering genetic factors contributing to cystic fibrosis, there are still many unknowns regarding how social-environmental exposures can impact an individual’s lung disease progression and further downstream clinical outcomes. The goal of this HEAL-CF project is to characterize the effects of social and environmental exposures on CF lung disease progression, while accounting for CFTR variants, and develop free-and-fair enhanced risk prediction tools that are co-produced by diverse groups of community partners.
This project is led by Rhonda Szczesniak, PhD, of Cincinnati Children’s Hospital Medical Center.
PRIDE CF: Evaluation of Experiences Health Care, Outcomes, and Needs of LGBTQIA+ Adults With CF (Health Equity Team Science Award)
Projects from the PRIDE-CF team share an objective to better understand how the intersectionality of having CF and being a member of the LGBTQIA+ community may impact health outcomes. According to the PRIDE-CF research plan, the team is exploring the central hypothesis “that LGBTQIA+ adults with CF may have poorer health outcomes due to compounded minority and chronic illness stress as well as differential access to health care ... this study would be the first, large-scale epidemiologic data collection of how being LGBTQIA+ interplays with having a chronic health condition.”
PRIDE-CF consists of three projects:
- Recruit adults with CF who identify as LGBTQIA+, and compare their health experiences to participants in the PRIDE cohort who do not have CF
- This project is led by Gregory S. Sawicki, MD, MPH of Boston’s Children’s Hospital.
- Explore the lived experiences of LGBTQIA+ people with CF to study the health inequities they may experience, including identifying the health care priorities and outcomes valued by LGBTQIA+ people with CF and examining the experiences and needs associated with gender-affirming care and interventions
This project is led by Kacie M. Kidd, MD, MS of the WVU School of Medicine.
- Understand the attitudes and practices of CF health care providers related to the care of their LGBTQIA+ patients and investigate the impact of being LGBTQIA+ on CF health outcomes
This project is led by Traci M. Kazmerski, MD, MS of the University of Pittsburgh.