Assess missingness and agreement between race and ethnicity recorded by a Children’s Oncology Group (COG) trial and information reported by parents of children with acute lymphoblastic leukemia.
Approach:
Design and participants: Retrospective analysis of prospectively collected parent-survey data from US participants in COG AALL1731, a phase III trial enrolling children aged 1–9 years with B-cell acute lymphoblastic leukemia.
Measures and analysis: Compared parent-reported race and ethnicity with case report form (CRF) data recorded by trial sites. Assessed missing data and concordance using percentages and Cohen κ.
Key Findings:
CRF race and ethnicity data were missing for 88 of 1,012 participants (8.7%), compared with parent-reported data missing for 10 (1.0%).
Agreement was moderate for race (72.8%; κ=0.45), substantial for ethnicity (83.0%; κ=0.65), and substantial for combined race and ethnicity (78.6%; κ=0.67).
Concordance was lowest for parent-reported multiracial children: 8 of 69 (11.6%); 33 (47.8%) were classified by the trial as non-Hispanic White.
Parent-reported non-Hispanic White participants had the highest concordance (90.6%). Concordance was significantly lower for American Indian or Alaska Native, Asian, Hispanic, and multiracial participants than for non-Hispanic White participants; the differenc…
Interpretation:
The authors report that CRF-based classification misclassified about one in five children and that discrepancies disproportionately affected several historically minoritized and multiracial groups. They state that parent-reported survey collection was feasible and readily scalable, and call for requiring parent- or self-reported data in NCTN trials.
Limitations:
The analysis was limited to one pediatric NCTN clinical trial, which may limit generalizability to other national trial networks.
Conclusion:
The authors state that accurate race and ethnicity data are foundational to identifying disparities, understanding mechanisms, and informing interventions.
by Callie Fry, Eva Robinson, Edie Weller, Morgan A. Paul, Rahela Aziz-Bose, Leanne Duhaney, McKenzie Griffin, Kristine Karvonen, Colleen A. Kelly, Sunyu Kang, Haley Newman, Puja J. Umaretiya, Daniel J. Zheng, Sumit Gupta, Rachel E. Rau, David T. Teachey, Sarah Alexander, John A. Kairalla, Kira Bona
USC researchers develop a scalable cell engineering platform that could overcome key manufacturing and therapeutic limitations of CAR-based immunotherapies
