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Introduction <p>Racial and ethnic minorities are frequently under-represented in biomedical research in the United States (US), and the under-representation is amplified in clinical trials in patients with rare diseases. The REthinking MeAsures of DivErsity (REMADE) study was conducted to develop and test a set of questions that may more accurately capture the diversity of patients via socioeconomic, cultural, and ethnic parameters.</p> Methods <p>A web-based survey was developed to assess race, ethnicity/culture, socioeconomic status, disability/mobility, and transportation issues. The survey responses included 5 racial categories as well as 17 cultures, heritages, and/or ethnicities and were multiselect. The survey was tested in US adults from under-represented populations. Survey results were compared with data collected with a pre-survey intake form (PSIF) that utilized historical categories for race and ethnicity.</p> Results <p>Of 219 total survey respondents, 59.8% (131/219) were assigned female sex at birth and 51.1% (112/219) were aged&#xa0;≥&#xa0;18 to&#xa0;&lt;&#xa0;30&#xa0;years. Respondents reported being predominantly Black [77.3% [163/211)] or white [19.0% (40/211)] in the PSIF. When respondents were allowed to assign percentages across multiple categories in the survey, only 34.2% (75/219) and 10.5% (23/219) identified as 100% Black or white, respectively. As with race, the REMADE ethnicity/cultural categories revealed greater diversity in the respondent population.</p> Conclusions <p>The REMADE survey results suggest that race and cultural identity are more multidimensional than historical questions/categories were able to capture. These insights, along with those generated on socioeconomic, disability, and transportation issues, will guide initiatives to support fair and equitable representation in clinical trials.</p>

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Characterizing Patient Diversity via Healthcare Access Determinants: A New Approach for Measuring Improvements in Clinical Trial Diversity in the United States

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2025年3月3日

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  • Jeffrey Yu,
  • Adrian Kielhorn,
  • James Murdoch,
  • Marcus Martin,
  • Eddilisa Martin,
  • Kelly McNeil-Posey,
  • Barbara Mungin,
  • Yiyi Xia,
  • Wendy Erler,
  • Nuwan C. Kurukulasuriya

摘要

Introduction

Racial and ethnic minorities are frequently under-represented in biomedical research in the United States (US), and the under-representation is amplified in clinical trials in patients with rare diseases. The REthinking MeAsures of DivErsity (REMADE) study was conducted to develop and test a set of questions that may more accurately capture the diversity of patients via socioeconomic, cultural, and ethnic parameters.

Methods

A web-based survey was developed to assess race, ethnicity/culture, socioeconomic status, disability/mobility, and transportation issues. The survey responses included 5 racial categories as well as 17 cultures, heritages, and/or ethnicities and were multiselect. The survey was tested in US adults from under-represented populations. Survey results were compared with data collected with a pre-survey intake form (PSIF) that utilized historical categories for race and ethnicity.

Results

Of 219 total survey respondents, 59.8% (131/219) were assigned female sex at birth and 51.1% (112/219) were aged ≥ 18 to < 30 years. Respondents reported being predominantly Black [77.3% [163/211)] or white [19.0% (40/211)] in the PSIF. When respondents were allowed to assign percentages across multiple categories in the survey, only 34.2% (75/219) and 10.5% (23/219) identified as 100% Black or white, respectively. As with race, the REMADE ethnicity/cultural categories revealed greater diversity in the respondent population.

Conclusions

The REMADE survey results suggest that race and cultural identity are more multidimensional than historical questions/categories were able to capture. These insights, along with those generated on socioeconomic, disability, and transportation issues, will guide initiatives to support fair and equitable representation in clinical trials.