Little is known about racial differences in the incidence of light chain (AL) amyloidosis despite the well-documented racial disparities in the epidemiology of other plasma cell disorders. The goal of this study was to examine the extent to which published clinical research in AL amyloidosis report information on patients’ race. Clinical research publications in AL amyloidosis between January 1, 2010, and December 31, 2020, from the USA were identified. In addition to the reporting of race, study design, funding, cohort size, year of publication, impact factor of publication journal, and first author degree were abstracted. Among papers reporting race, we also assessed whether ethnicity was reported separately. A PubMed search yielded 2,770 papers of which 220 met the pre-specified criteria for analysis. Of those, 37 (16.5%) reported race. Single institution publications, those with physicians as first authors, and those published in journals with impact factor 6 or higher were less likely to report race. On multivariate analysis, only single institution studies were negatively associated with race reporting. Of the 37 papers reporting race, none defined it in methods, 16% stated how race was identified, and 19% discussed its significance. Ethnicity was reported in 6 studies. Our results indicate that race/ethnicity is underreported in USA. AL amyloidosis clinical literature leads to a challenge for identifying potential racial/ethnic disparities. Standards for collecting and reporting racial/ethnic demographics are needed. Clear and consistent reporting of race and ethnicity of clinical populations is a necessary first step in identifying disparities and promoting equitable care.
ASJC Scopus subject areas
- Health(social science)
- Sociology and Political Science
- Health Policy
- Public Health, Environmental and Occupational Health