Comparison of Trial-Collected and Parent-Reported Race and Ethnicity in a Children’s Oncology Group Trial - Takeaways - MDSpire
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Comparing Race and Ethnicity Recorded in a Children’s Oncology Group Trial With Parent-Reported Information

  • 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

  • November 11, 2026

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  • 1

    This study compared race and ethnicity recorded by the Children’s Oncology Group with information reported by parents of US participants in a pediatric acute lymphoblastic leukemia trial.

  • 2

    Trial-collected race and ethnicity were missing for 8.7% of participants, compared with 1.0% for parent-reported information.

  • 3

    Agreement was moderate for race (72.8%; κ = 0.45) and substantial for ethnicity (83.0%; κ = 0.65) and combined race and ethnicity (78.6%; κ = 0.67).

  • 4

    Concordance was lowest for parent-reported multiracial participants (11.6%); 47.8% were classified by the trial as non-Hispanic White.

  • 5

    The authors reported that CRF-based classification misclassified 1 in 5 children and called for parent- or self-reported race and ethnicity data in NCTN trials.

Original Source(s)

Comparison of Trial-Collected and Parent-Reported Race and Ethnicity in a Children’s Oncology Group Trial

  • 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

  • November 11, 2026

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