Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled

Oh, Sam S.; Galanter, Joshua; Thakur, Neeta; Pino-Yanes, María; Barceló, Nicolás E.; White, Marquitta J.; Bruin, Danielle M. de; Greenblatt, Ruth M.; Bibbins‐Domingo, Kirsten; Wu, Alan H.B.; Borrell, Luisa N.; Gunter, Chris; Powe, Neil R.; Burchard, Esteban G.

doi:10.1371/journal.pmed.1001918

Cited by 435 publications

(305 citation statements)

References 31 publications

Supporting

Mentioning

301

Contrasting

Order By: Relevance

“…As such, the gaps in research considering CLD populations should be examined to encourage more inclusion of CLD participants, and identify specific recruitment targets. This study supports the contentions of Oh et al [10] that, despite movement toward more inclusive samples and an increase in ASD treatment studies, the number of UPs reported is still low. Results were also consistent with recent research on UP in ASD [12,13], and this systematic examination revealed some significant findings.…”

Section: Resultssupporting

confidence: 90%

“…Without more participation of CLD participants, the evidence base for ASD intervention cannot assuredly be generalized beyond middle SES, monolingual EAs. Better representation is therefore critical to the promotion of good science, effective and efficient treatments, economics, and social justice [10]. Researchers must take this a step further, however, and improve reporting practices that can ultimately facilitate better implementation science.…”

Section: Discussionmentioning

confidence: 99%

“…For example, the 1993 National Institutes of Health (NIH) Revitalization Act mandated reporting of demographics with prioritization of women and minorities [9]. As a result, more women were included, facilitating gains in knowledge of gender differences in disease presentation, symptoms, and treatment response [10]. Diversification by race/ethnicity has not been as successful, however, and disparities persist across a range of health indicators [11].…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Reporting of Underrepresented Populations in Autism Treatment Studies Across 25 Years

Fannin¹

2017

Clin Arch Commun Disord

View full text Add to dashboard Cite

(ASD) now exceeds other severe developmental disorders, making it a significant public health concern [1]. Timely administration of effective treatments is crucial [2] but knowledge of how to tailor treatments to particular children is incomplete. This is evidenced by inconsistent findings, where some children make expressive language gains, while others remain minimally verbal [3]. Further inquiry is necessary to the purpose of better customizing treatments to increase language gains across various populations.Intervention approach is an active ingredient that may contribute to outcome variance, but other factors can alter response to the intervention. Proponents of dynamic systems theory (DST) posit that people have multiple, complex systems outside themselves, such as the home, neighborhood, community, school, workplace, and the people therein, that interact with the inherent developmental processes [4]. This theory exPurpose: Eight language and autism related journals published between 1993 and 2017 were analyzed to identify trends in the inclusion of underrepresented populations in empirical studies with social skill, play, joint attention, and expressive language outcomes. Relationships among treatment outcomes, treatment settings, and underrepresented population types were explored.Methods: All articles (12,381) were searched to identify intervention studies that included participants with autism and were classified by treatment target and setting (N =291). The selected studies were then examined to determine if any participants were from underrepresented populations (n=138) and categorized by type of underrepresented population.Results: Most studies did not indicate demographic characteristics beyond disability, age, and gender; and few relationships between frequency of underrepresented population articles, treatment targets, or intervention setting emerged. Results indicated that demographic characteristics were often omitted, despite recommendations to report descriptive information.Conclusions: Although inclusion of underrepresented populations has increased since 1993, treatment study results cannot yet be generalized to a more diverse population, due to the disproportionately low number of participants from racial/ethnic minority, multilingual, and low socioeconomic status groups reported and/or included in studies. The dearth of underrepresented participants suggests that conscious efforts to recruit and report them are still necessary.

show abstract

Section: Resultssupporting

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Reporting of Underrepresented Populations in Autism Treatment Studies Across 25 Years

Fannin¹

2017

Clin Arch Commun Disord

View full text Add to dashboard Cite

show abstract

“…Although Latinos and African Americans comprise approximately 30% of the population in the USA, these patients account for just about 6% of those enrolled in federally funded clinical trials 8. Racial/ethnic minority groups including Native Hawaiians, Asian Americans, American Indians, and PI were found to be significantly underrepresented in cancer clinical trials.…”

Section: Discussionmentioning

confidence: 99%

Racial disparities in outcomes for high‐grade uterine cancer: A California cancer registry study

et al. 2018

View full text Add to dashboard Cite

BackgroundEndometrial cancer (EC) is the most common gynecologic malignancy. We examined factors affecting overall prognosis and survival among different racial groups diagnosed with high‐grade EC.MethodsWe utilized the California Cancer Registry database (CCR) to identify women with high‐grade II EC from 1998 to 2009. Using the Kaplan‐Meier method, we described disease‐specific survival. Survival by stage, race, and time to treatment category was compared using the log‐rank test. The associations of race with disease‐specific survival were modeled using Cox proportional hazards regression. Covariates were selected a priori.ResultsA total of 10 647 patients met study eligibility criteria. The majority of patients in this cohort of high‐grade EC were non‐Hispanic (NH) white (64.1%), followed by Hispanic (15.7%), Asian (10.4%), and NH black (9.8%). NH black women had higher incidence of certain aggressive histologic subtypes in comparison with NH whites, including serous carcinomas and carcinosarcoma.Non‐Hispanic black patients had a worse 5‐year disease‐specific survival (DSS) when compared to other racial groups. The five‐year DSS for NH black women was 54% (51%‐57%), compared to NH white women 66% (65%‐67%), Hispanic 67% (64%‐69%), and Asians 69% (67%‐72%) (P < 0.0001). This clear survival disadvantage of NH black women persisted when controlling for other factors.ConclusionsNon‐Hispanic black women have a higher incidence of more aggressive histologic subtypes even among a cohort of women high‐grade EC and have a disproportionately worse disease‐specific survival after controlling for factors such as age, histologic subtype, stage, time to treatment, and type of treatment.

show abstract

“…The NIH Revitalization Act in 1993 brought racial and ethnic minority inclusion in clinical research to national attention by requiring the inclusion of minorities as a criterion for NIH funding. The NIH Revitalization Act limited explicit exclusion of minorities but has done little to increase minority participation in clinical trials (15,28).…”

Section: Discussionmentioning

confidence: 99%

Minorities are Underrepresented in Clinical Trials of Pharmaceutical Agents for Cystic Fibrosis

McGarry

McColley

2016

Annals ATS

View full text Add to dashboard Cite

Rationale: Members of racial or ethnic minorities make up an appreciable proportion of patients with cystic fibrosis (CF) and have worse outcomes than non-Latino white individuals. Between 1,999 and 2014, the CF Foundation Patient Registry reported an increase in minorities from 5 to 8.2% for Latinos, from 3 to 4.6% for black individuals and from 1.4 to 3.1% for "Other."Objectives: To evaluate the representation of racial and ethnic minorities in pharmacology clinical trials for CF. Methods:We analyzed pharmacology clinical trials in CF published between 1999 and 2015 by searching PubMed and published study reference lists for qualifying study reports. We examined whether the race and ethnicity of study subjects were reported and, if so, what percentage of subjects represented major minority groups.Measurements and Main Results: Among 147 pharmacology clinical trials, only 19.7% reported the race or ethnicity of study subjects. Latinos were verified as included in 7.5% of clinical trials, black individuals in 6.8%, and Asians in 2.0%. Inclusion of subjects described as "Other race" was reported in 7.5% of trials. In 29 clinical trials that reported race and ethnicity, the percentage of minorities included as subjects was 2.0% for Latinos, 1.0% for black individuals, and 0.1% for Asians.Conclusions: Although CF disproportionately affects non-Latino white individuals, members of other racial or ethnic groups are proportionally underrepresented in CF pharmacology clinical trials. Inadequate inclusion of minorities and failure to report the racial or ethnic background of study subjects limits information about factors influencing drug response and may contribute to health disparities for minorities with CF.Keywords: cystic fibrosis; minority groups; ethnic groups; clinical trials

show abstract

Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled

Abstract: Esteban Gonzalez Burchard and colleagues explore how making medical research more diverse would aid not only social justice but scientific quality and clinical effectiveness, too.

Cited by 435 publications

References 31 publications

Reporting of Underrepresented Populations in Autism Treatment Studies Across 25 Years

Reporting of Underrepresented Populations in Autism Treatment Studies Across 25 Years

Racial disparities in outcomes for high‐grade uterine cancer: A California cancer registry study

Minorities are Underrepresented in Clinical Trials of Pharmaceutical Agents for Cystic Fibrosis

Contact Info

Product

Resources

About