Enhancing diversity in endometriosis clinical trials: Application of the clinical diversity scoring framework

Endometriosis affects 2%–10% of reproductive age women, yet inequities in diagnosis and treatment persist across racial and ethnic groups.1 Historically, endometriosis was mischaracterized as a condition of white women, resulting in exclusion of other groups in research. Recent evidence indicates that although endometriosis is diagnosed at lower rates in Asian, Black, and Hispanic women, representative research is lacking.1, 2 To evaluate participant representation, we applied the Clinical Diversity Scoring Framework to US endometriosis clinical trials published from 2018 to 2023.3 From 618 identified studies, only four trials met eligibility criteria (Figure 1). Two trials received a “fair” diversity rating, while two were rated “poor.” All four reported on white participants, but only two disclosed data for Asian, Black, or Hispanic participants. White participants were consistently overrepresented relative to estimated prevalence. Hispanic/Latinx representation was generally adequate, but Asian and Black participants were markedly underrepresented (Table 1). Importantly, no trial reported participation of Native American or Pacific Islander individuals. These findings highlight a substantial gap between the demographics of trial participants and the US endometriosis population. Inadequate diversity threatens the generalizability of results and perpetuates inequities in care. Barriers to minority participation include historical mistrust of research, socioeconomic disadvantage, and limited healthcare access. Endometriosis-specific barriers, such as the requirement of surgical diagnosis, further exclude underrepresented populations.8 Improving representation requires targeted recruitment strategies, trust-building between clinicians and patients, and clearer communication regarding trial procedures. Policy mechanisms might also accelerate change, including requiring diversity action plans at the funding and publication stages. Journals could mandate recruitment strategy statements, while trial registries and funding agencies could enforce accountability measures. Our analysis underscores that current endometriosis trials inadequately represent minority populations despite well-documented disparities in prevalence and treatment. Addressing these gaps is essential for equity, scientific rigor, and the translation of findings into effective, inclusive care. KI and AD performed data extraction and drafting of the manuscript. HH and JTB contributed to data analysis and interpretation. GJ and CH assisted with literature review and manuscript editing. MM provided clinical expertise in obstetrics and gynecology. AF and MV supervised the project, provided critical revisions, and approved the final manuscript. The authors have no conflicts of interest to declare. This study was registered on Open Science Framework. https://osf.io/cm72h/?view_only=be5e2b0022074dc687ff5824044eb1a1. Data S1. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.