Evidence map›Paper›PMID 40025390›Full record

ArticleAdvances in therapy2025

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

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

Abstract read
In one paragraph

Article in Advances in therapy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Jeffrey Yu *Alexion, AstraZeneca Rare Disease, 121 Seaport Blvd., Boston, MA, 02210, USA.
Adrian Kielhorn *Alexion, AstraZeneca Rare Disease, 121 Seaport Blvd., Boston, MA, 02210, USA. adrian.kielhorn@alexion.com.
James MurdochM&B Sciences, 4445 Eastgate Mall, Ste. 200, San Diego, CA, 92121, USA.
Marcus MartinM&B Sciences, 4445 Eastgate Mall, Ste. 200, San Diego, CA, 92121, USA.
Eddilisa MartinM&B Sciences, 4445 Eastgate Mall, Ste. 200, San Diego, CA, 92121, USA.
Kelly McNeil-PoseyAlexion, AstraZeneca Rare Disease, 121 Seaport Blvd., Boston, MA, 02210, USA.
Barbara MunginAlexion, AstraZeneca Rare Disease, 121 Seaport Blvd., Boston, MA, 02210, USA.
Yiyi XiaAlexion, AstraZeneca Rare Disease, 121 Seaport Blvd., Boston, MA, 02210, USA.
Wendy ErlerAlexion, AstraZeneca Rare Disease, 121 Seaport Blvd., Boston, MA, 02210, USA.
Nuwan C KurukulasuriyaAlexion, AstraZeneca Rare Disease, 121 Seaport Blvd., Boston, MA, 02210, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionRacial 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.

methodsA 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.

resultsOf 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.

conclusionsThe 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.

Indexed as

Cultural DiversityHealth Services AccessibilityAdolescentAdultAgedClinical Trials as TopicEthnicityFemaleHumansMaleMiddle AgedMinority GroupsPatient SelectionRacial GroupsSocial ClassSocioeconomic FactorsClinical trial diversityCultural identityEthnicityHealthcare access determinantsRace

Identifiers

PMID40025390
PMCPMC11929692

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.