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Cited by 29Ethics in Clinical ResearchMultiple Sclerosis Research StudiesRace, Genetics, and Society

The DOI matches its Crossref record; 26 of the 26 references it cites were found in a registry or an index.

Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups

Open access
Pimentel Maldonado, Daniela A., Moreno, April, Williams, Mitzi J., Amezcua, Lilyana, Feliciano, Shawn, Williams, Anita, Machemer, Daniel, Livingston, Terrie, LaRocque, Monique, Glim, Melissa, Schmidt, Hollie·2021·International Journal of MS Care
DOI 10.7224/1537-2073.2019-131PMC PMC8405146
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Abstract

Background: For unclear reasons, minorities have been historically underrepresented in multiple sclerosis (MS) clinical trials. We hypothesized that different perceptions and preferences about research participation among racial and ethnic groups contribute to this imbalance. Methods: Members of the MS Minority Research Engagement Partnership Network developed a Web-based survey in English and Spanish on research impressions, concerns, and preferences regarding study attributes among people with MS. Invitations to take the survey were distributed by network members and partner organizations. Results: We included 2599 participants with MS (2111 White, 215 African American; 188 Hispanic). Consistently disliked study attributes included potential harms to health and confusing study information. Compared with White and non-Hispanic participants, respectively, African American (odds ratio [OR] = 2.05, P ≤ .001) and Hispanic (OR = 1.79, P = .003) participants were more concerned about being used by the research team. Hispanic participants were more concerned about research participation carrying risks to their legal status (OR = 1.70, P = .001). Hispanic (OR = 3.18, P ≤ .001) and African American (OR = 5.51, P ≤ .001) participants were more likely to prefer for the study to benefit their own racial/ethnic group. A top concern across all groups was not being fully informed about the research. Conclusions: We found strong support for research across racial and ethnic groups; however, minority groups have specific concerns regarding mistrust, receiving poor-quality care, unemployment, health insurance, and legal status. Investigators wanting to recruit a diverse study population are advised to show how they have addressed these concerns and to communicate how the research will advance the science and literature and result in better care and/or other benefits to underrepresented communities.

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Crossref · 10.7224/1537-2073.2019-131

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  • Seven included studies centred on the recruitment of Hispanic or Latin American individuals.

    “Although 7 studies centred on the recruitment of Hispanic or Latin American individuals [12, 15, 36, 50, 51, 57, 66], most of them did not differentiate between the terms Hispanic”

    From Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review (2025) · cites this paper as [57]

    The Survey Dissemination section describes recruiting people with MS, and the Results report that 188 participants were Hispanic. But the Discussion describes the study as a survey of research perceptions across racial and ethnic groups, not one centred specifically on recruiting Hispanic or Latin American individuals. The count of seven refers to the citing paper’s group of studies, not a finding this individual source could establish. (LLM, conf=0.82)

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  • In Pimentel Maldonado et al., participants who self-described as African American expressed concerns about data privacy, while participants who self-described as Hispanic reported concerns related to health insurance benefits or immigration status due to trial participation.

    “In a study by Pimentel Maldonado et al. [57], participants who self-described as African American expressed concerns about data privacy, while participants who self-described as Hispanic reported concerns related to health insurance benefits or immigration status due to trial participation.”

    From Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review (2025) · cites this paper as [57]

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  • Given the cultural and experiential specificities rooted in the US, these findings are unlikely to be readily transferred and applied in other countries.

    “Given the cultural and experiential specificities rooted in the US, these findings are unlikely to be readily transferred and applied in other countries [57, 74].”

    From Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review (2025) · cites this paper as [57]

    The Results report that 92.89% of participants lived in the United States, and the discussion describes concerns that differed across racial and ethnic groups. Those passages support the study’s US-heavy and group-specific context, but the paper does not say its findings are unlikely to transfer to other countries. (LLM, conf=0.79)

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  • A total of 12 included articles were assessed with an MMAT score below 3, including two RCTs, three non-randomised studies, six quantitative descriptive studies and one mixed methods study.

    “A total of 12 articles were assessed with a score of below 3. This included two RCTs [61, 66], three non-randomised studies [15, 46, 64], six quantitative descriptive studies [9, 37, 38, 40, 57, 58] and one mixed methods study [60].”

    From Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review (2025) · cites this paper as [57]

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Metadata

Authors
Pimentel Maldonado, D. A., Moreno, A., Williams, M. J., Amezcua, L., Feliciano, S., Williams, A., Machemer, D., Livingston, T., LaRocque, M., Glim, M., & Schmidt, H.
Affiliations
University of Southern California (US)
ORCID
Venue
International Journal of MS Care
Publisher
Consortium of Multiple Sclerosis Centers
Published
2021-01-12
Volume
23
Issue
4
Pages
170-177
ISSN
1537-2073 (ISSN-L)
DOI
10.7224/1537-2073.2019-131
PMC
PMC8405146
OpenAlex
W3120368406
Cited by
29
References
26
Citations by year
2026: 2 · 2025: 8 · 2024: 5 · 2023: 10 · 2022: 1 · 2021: 3
FWCI
4.12
Type
journal article
Language
en
Open access
Locations
  • International Journal of MS Care (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Funders
Patient-Centered Outcomes Research Institute
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Clinical Neurology › Multiple Sclerosis Research Studies
  • Social Sciences › Anthropology › Race, Genetics, and Society
Keywords
multiple sclerosis, racial and ethnic disparities, clinical trial recruitment, mistrust of research, African American patients, Hispanic patients, health insurance, unemployment, underrepresented groups

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