Neuro-oncology Advances, June 2020 – The team at the Children’s Brain Tumor Project recently conducted to a scientific study that explored ethnic and racial representation in brain tumor trials and found that despite increasing representation in the American population, minorities are under-represented in brain tumor clinical trials.
In addition, the study revealed that—although numerous legal requirements and ethical mandates are in place—race-based information is remarkably absent from a majority of the published results from brain tumor trials conducted over the last decade. In fact, 70% of brain tumor trials didn’t even include race-based patient demographics to allow for stratifying data for analysis.
The aim of this study was to quantify and map ethnic and racial representation in brain tumor trials and to examine the potential gaps in trial recruitment. The team analyzed trials registered with
clinicaltrials.gov between July 1, 2005, and November 11, 2017, using a combination of PedMed/Medline and Google Scholar to find publications associated with those trials, including patient demographic information (where available).
After reviewing 471 trials and applying expertise in bioinformatics to analyze the data, the findings were truly eye-opening with regard to the lack of diversity recorded in brain tumor trials. Not only did the trials have significant gaps in representation, those gaps persisted even in dense multicultural centers like New York City.
We know that there are often important variables to consider across different genders, ethnicities, and races when studying any particular disease. Trials should be designed to require appropriate diversity to accurately represent the patient population, and ensure those trials are easily accessible to a diverse population.
This information is important to consider when drawing conclusions from existing published results, in addition to designing present-day clinical trials. Diversity is essential for scientific accuracy, and the proper planning and reporting of race in clinical trials is needed to account for differences in presentation, treatment and response. The Children’s Brain Tumor Project is proud to shine a light on this issue and advocate for changes in trial design as a result.