Professor of Pediatrics, Hematology-Oncology, and Co-Leader, Cancer Prevention and Population Sciences Program, Baylor College of Medicine
As part of a special series of emails during Childhood Cancer Awareness Month 2025, we spoke with Dr. Philip Lupo, lead author of “Enrollment in Children’s Oncology Group’s clinical trials: population-based linkage with the National Childhood Cancer Registry,” about the CCDI data-related insights that are the subject of the article.
What are the key takeaways of this paper?
Researchers linked data from the National Childhood Cancer Registry (NCCR), which tracks cancer cases across the U.S., with COG trial data to better understand who is participating in these studies. Between 2007 and 2018, over 134,000 children and teens were diagnosed with cancer according to the NCCR. Of these, about 38% (51,062 patients) were enrolled in a COG study. Researchers found that:
- Younger children (especially those under age 5 years) were more likely to be enrolled than teenagers aged 15–19 years
- Children who were non-Hispanic White were more likely to be enrolled than those who were Hispanic, Black, or Asian/Pacific Islander
- Children with leukemia, neuroblastoma, and renal tumors had higher enrollment rates (over 67%), while those with brain tumors (CNS neoplasms), lymphomas, and germ cell tumors had much lower rates.
What was the biggest surprise?
We were surprised to see differences in trial enrollment, particularly in terms of age at diagnosis and type of cancer. These findings may be partly explained by the fact more common childhood cancers including acute lymphoblastic leukemia and neuroblastoma occur more frequently in younger children. In addition, evaluating rates of trial enrollment by specific cancer type can help us understand the gaps in our current clinical trial portfolio to better address unmet needs.
Why are these insights important for planning future Children’s Oncology Group clinical trials?
While many children with cancer are enrolled in clinical trials, the study highlights the importance of improving access. Addressing this challenge requires innovation in study design and conduct, including consideration of decentralized clinical trials and continued work with NCORP to better accommodate potential trial participants in rural areas. It suggests that linking cancer registry data with clinical trial data can help identify gaps and guide efforts to include more diverse populations. This could lead to better treatments and outcomes for all children with cancer.
How valuable was NCCR data in identifying these insights?
Having NCCR data was vital to give us population-based estimates of cancer incidence. Without this, it is difficult to know what groups of children might be missing out on key discoveries.
How else could the NCCR potentially help with evaluating and designing other childhood cancer clinical trials?
Leveraging the NCCR helps us by giving us a complete understanding of characteristics among children diagnosed with cancer, which will help us include all children in future trials.