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Prevalence of Race/Ethnicity Reporting in Light Chain (AL) Amyloidosis Clinical Research in the USA

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Abstract

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.

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Acknowledgements

The authors acknowledge Ms. Rita Sieracki, MLS and Ms. Elizabeth Suelzer, MLIS, AHIP with MCW Libraries for their assistance in conducting the literature review. ML was supported by the Department of Medicine for a Medical Student Summer Research Project Research to conduct this research. Research reported in this publication was also supported by K23 HL141445 (AD). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Funding

National Heart,Lung,and Blood Institute,K23HL141445,Anita D'Souza,Medical College of Wisconsin,Medical Student Summer Research Program,Mingqian Lin

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Authors and Affiliations

  1. Medical College of Wisconsin, Milwaukee, WI, 53005, USA

    Mingqian Lin, Liliana E. Pezzin & Anita D’Souza

  2. University of Texas Southwestern, Dallas, TX, USA

    Ali Mohamedi & Ankit Kansagra

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  1. Mingqian Lin
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  2. Liliana E. Pezzin
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  3. Ali Mohamedi
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  4. Ankit Kansagra
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  5. Anita D’Souza
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Contributions

Study design: AD and AK. Data collection and analysis: ML, LP and AD. Draft manuscript: ML, AD. Results review and editing the paper: All authors.

Corresponding author

Correspondence to Anita D’Souza.

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Conflict of Interest

ML, LP, MA have no conflicts to reports. AK reports the following: Advisory Board:

Abbvie, Alynylam, BMS, Cota Health, GSK, Janssen, Oncopeptide, Takeda, AD reports the following: Research funding: Caelum, Prothena, Sanofi, Takeda, TeneoBio, Advisory Board: Pfizer, Bristol Myers Squibb, Consultant: Janssen.

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Lin, M., Pezzin, L.E., Mohamedi, A. et al. Prevalence of Race/Ethnicity Reporting in Light Chain (AL) Amyloidosis Clinical Research in the USA. J. Racial and Ethnic Health Disparities 10, 644–650 (2023). https://doi.org/10.1007/s40615-022-01252-3

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  • DOI: https://doi.org/10.1007/s40615-022-01252-3

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