Background: Literature has shown that racial, ethnic, and gender disparities exist among clinical research participants and within the ranks of academic institutions. To assess this and develop solutions to potential disparities in pediatric neuro-oncology, the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and Children's Brain Tumor Network (CBTN) Diversity, Equity, and Inclusion (DEI) working group distributed a survey to all members of the consortia regarding the state of DEI in our research environments. In parallel, the working group collated clinical data from a public CBTN dataset and a PNOC clinical trial patient cohort to assess racial, ethnic, and gender differences in clinical research participation and outcomes. Methods: This study consisted of two components: an electronically distributed REDCap survey of all PNOC and CBTN consortia members (distributed Fall 2020) and analysis of pediatric neuro-oncology patient cohorts from CBTN and PNOC. The survey collected demographic information of respondents and Likert opinions on DEI at the consortia- and institution level (e.g. “All team members are treated fairly”). Responses were then stratified based on self-identified race, ethnicity, and gender and by age and job title. Patient-level data from the CBTN and PNOC cohorts was collated to evaluate overall patient demographics and clinical outcomes stratified by race, ethnicity, and gender and including differences in survival and clinical research enrollment. Outcomes: Fifty-seven PNOC/CBTN members initiated survey responses, with 45 completing the entire survey (estimated 20-25% response rate). Responders were predominantly white, non-hispanic females with the most common age range of 35-44 years and with faculty or physician job titles, followed by clinical research staff. Statistically significant differences were identified in questions related to the DEI environment mainly at the institution-level. Regarding feelings of inclusion, acceptance, and fair treatment, distinctions were identified across self-reported race and gender with white race correlating with higher frequency of feeling included and respected and females most commonly reporting neutral or disagreement that all team members are treated fairly and that different cultures and backgrounds are valued and interact well. At the patient level, the CBTN and PNOC data pulls included 1711 and 463 patients, respectively, with analyses currently underway and to be aligned with data from the Central Brain Tumor Registry of the United States (CBTRUS) to assess for race, ethnicity, gender, and locoregional differences in our patient cohort and in the context of national registry data. Conclusions: The experiences and feelings of inclusion and treatment of clinical research members within the clinical research environment of pediatric neuro-oncology differ based on self-identified race and gender. Investigation is in process to extrapolate patient-level differences across race, ethnicity, and gender and in the context of larger registry data for pediatric neuro-oncology.
Citation Format: Emily Marshall, Tom Belle Davidson, Jeffrey Stevens, Kristina Cole, Fatema Malbari, Tabitha Cooney, Lance Ballaster, Kaitlin Lehmann, Shannon Robins, Miguel Brown, Christopher Blackden, Christopher Friedman, Ammar Naqvi, Jonathan Waller, Ximena Cueller, Jennifer Mason, Jena Lilly, Phillip Jay B Storm, Adam Resnick, Michael Prados, Sabine Mueller, Angela Waanders, Cassie Kline. Identifying disparities across race, ethnicity, and gender in pediatric neuro-oncology clinical research - from patient to provider [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-116.