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Missing diversity in brain tumor trials
Birra Taha1, Graham Winston2, Umberto Tosi2
1Department of Neurosurgery, University of Minnesota, Minneapolis, MN, USA.
Neuro-Oncology Advances
|July 10, 2020
Summary
Minorities are underrepresented in brain tumor clinical trials, with data gaps persisting even in diverse cities. Most trials lack published race and ethnicity data, hindering equitable research for brain tumor treatments.
Area of Science:
- Neuro-oncology
- Clinical trial research
- Health equity
Background:
- Brain tumors pose significant morbidity, necessitating robust clinical trials for effective treatment strategies.
- Understanding ethnic and racial representation in these trials is crucial for identifying and addressing recruitment disparities.
- Existing gaps in trial participation persist, even in highly diverse urban centers like New York City.
Purpose of the Study:
- To quantify and map ethnic and racial representation in brain tumor clinical trials.
- To identify potential gaps in trial recruitment and participation across different demographic groups.
- To examine the availability of race and ethnicity data in published trial results.
Main Methods:
- Analysis of brain tumor clinical trials registered on ClinicalTrials.gov (July 2005 - November 2017).
- Utilized PubMed/MEDLINE and Google Scholar to retrieve trial publications and patient demographic data, including race or ancestry.
- Compared participant demographics against general population data to assess representation.
Main Results:
- 27% of analyzed trials had no published results; only 28.4% reported participant race/ethnicity.
- Whites were overrepresented in metastatic and high-grade brain tumor trials (P < .001).
- Blacks/African Americans, Hispanics, and Asians were underrepresented in high-grade trials (P < .001); Blacks/African Americans were also underrepresented in metastatic trials (P < .001).
- Pediatric trials showed no representation gaps; similar disparities were observed in New York City.
Conclusions:
- Minorities remain significantly underrepresented in brain tumor clinical trials despite increasing population diversity.
- A substantial majority (70%) of brain tumor trials lack published race-based demographic information, despite ethical and legal mandates.
- Addressing these representation gaps and improving data transparency are critical for advancing equitable brain tumor research and treatment.
