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Racial, Ethnic, Sex, and Gender Equity for Inclusive Interstitial Lung Disease Research: An Official American Thoracic Society Research Statement

  • Deborah Assayag*
  • , Ayodeji Adegunsoye
  • , American Thoracic Society Assembly on Clinical Problems
  • , Vincent Cottin
  • , Yolanda Mageto
  • , Francesco Bonella
  • , Raphael Borie
  • , Ivette Buendia
  • , Nazia Chaudhuri
  • , Kevin Gibson
  • , Kerri A. Johannson
  • , Naftali Kaminski
  • , Yet H. Khor
  • , John S. Kim
  • , Sydney B. Montesi
  • , Nadia Nathan
  • , Andrea Quaiattini
  • , Anne Marie Russell
  • , Claudia Valenzuela
  • , Marlies S. Wijsenbeek
  • *Corresponding author for this work
  • The University of Chicago
  • Research Institute of the McGill University Health Centre
  • Hôpital Louis Pradel
  • Claude Bernard University Lyon 1
  • Baylor Health Care System
  • Ruhrlandklinik
  • Centre de Recherche Sur L'inflammation
  • Instituto Nacional de Enfermedades Respiratorias
  • Ulster University
  • University of Pittsburgh Medical Center
  • Cumming School of Medicine
  • Yale University
  • Monash University
  • University of Virginia School of Medicine
  • Massachusetts General Hospital
  • Sorbonne Université
  • McGill University
  • University of Birmingham
  • University of Adelaide
  • University Hospitals Birmingham NHS Foundation Trust
  • Hospital Universitario de la Princesa

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)
3 Downloads (Pure)

Abstract

Rationale: 

Equitable care for all individuals living with interstitial lung disease (ILD) must be rooted in rigorous, high-quality research that is globally representative and inclusive. 

Objectives: 

The objectives of this American Thoracic Society Statement are to emphasize the importance of racial, ethnic, sex, and gender considerations in ILD research; summarize existing evidence on differences and disparities in ILD care; and suggest practical recommendations to promote equitable inclusion in clinical research. 

Methods: 

A multidisciplinary committee of experts in ILD, health equity, sex/gender, and race/ethnicity equity conducted a comprehensive review of the literature related to disparities in ILD. The group identified relevant studies pertaining to clinical trial participation and outcomes by race, ethnicity, sex, and gender. Consensus-based recommendations for equitable inclusion in research were developed through iterative discussion and agreement by all members. 

Main Results: 

The review identified significant disparities across ILD domains, including epidemiology, diagnosis, management, treatment access, and clinical outcomes. Minority populations remain underrepresented in ILD research, especially in clinical trials of ILD treatment. Research efforts and programs in ILD must be based on inclusive practices. This can be accomplished by changing how subgroup data are collected, analyzed, and reported in ILD clinical trials, with greater attention to the inclusion of minority populations, at all levels of research. 

Conclusions: 

Improving equity in ILD research is paramount to enhancing the generalizability and applicability of findings to the global ILD population. This goal will require coordinated action by all stakeholders, including researchers, institutions, funding agencies, and patient communities.

Original languageEnglish
Pages (from-to)2251-2267
Number of pages17
JournalAmerican Journal of Respiratory and Critical Care Medicine
Volume211
Issue number12
DOIs
Publication statusPublished - Dec 2025

Bibliographical note

Publisher Copyright:
© 2025 by the American Thoracic Society

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