Race and ethnicity reporting in endometriosis literature: a systematic review

Background: Accurate reporting of participants’ race and ethnicity is essential for assessing the representativeness of study populations and for identifying potential disparities in diagnosis, treatment, and outcomes. Objectives: To assess the quantity and quality of race and/or ethnicity reporting in the endometriosis literature. Methods: A systematic review of all human studies reporting data about endometriosis as the primary objective published in 2022. Studies were identified from electronic searches of MEDLINE, Google Scholar, Web of Science, Scopus, ClinicalTrials.gov, and the Cochrane Library databases. Main Outcomes Measures: The frequency and quality of participants’ race and/or ethnicity reporting based on compliance with the guidelines set by the ICMJE. Study characteristics that influenced the reporting of race and/or ethnicity were assessed. Publications from journals that followed ICMJE recommendations were compared with those from journals that did not. Results: 648/2054 (31.6%) articles met the inclusion criteria. Sixty-five studies (10.0%) reported participants’ race and/or ethnicity, and the overall quality of this reporting was poor. The frequency of reporting did not differ between journals adhering to ICMJE guidelines and those that did not (24, 11% vs. 41, 9.5%; P=0.52), between studies involving national versus international populations (60, 92.3% vs. 5, 7.7%; P=0.28), or between male and female authors (33, 50.8% vs. 32, 49.2%; P=0.38) respectively. Race and/or ethnicity were reported more often in prospective than in retrospective studies (37, 56.9% vs. 18, 27.7%; P<0.001), and in multicentre compared to single-centre studies (44, 67.7% vs. 21, 32.3%; P<0.001). Conclusions: The reporting of race and/or ethnicity in human-based endometriosis research remains both infrequent and inconsistent, including in journals claiming adherence to ICMJE standards. These results highlight the need for improved and uniform documentation of racial and ethnic data in endometriosis research. What is New? Human-based articles focusing on endometriosis have a low frequency and quality of race and/or ethnicity reporting, even in journals claiming to follow ICMJE recommendations.