The Children's Oncology Group Childhood Cancer Research Network (CCRN): Case catchment in the United States
Article first published online: 29 MAY 2014
© 2014 American Cancer Society
Volume 120, Issue 19, pages 3007–3015, October 1, 2014
How to Cite
Musselman, J. R. B., Spector, L. G., Krailo, M. D., Reaman, G. H., Linabery, A. M., Poynter, J. N., Stork, S. K., Adamson, P. C. and Ross, J. A. (2014), The Children's Oncology Group Childhood Cancer Research Network (CCRN): Case catchment in the United States. Cancer, 120: 3007–3015. doi: 10.1002/cncr.28813
- Issue published online: 19 SEP 2014
- Article first published online: 29 MAY 2014
- Manuscript Accepted: 14 APR 2014
- Manuscript Revised: 11 APR 2014
- Manuscript Received: 23 DEC 2013
- childhood cancer;
- United States;
- clinical trials;
The Childhood Cancer Research Network (CCRN) was established within the Children's Oncology Group (COG) in July 2008 to provide a centralized pediatric cancer research registry for investigators conducting approved etiologic and survivorship studies. The authors conducted an ecological analysis to characterize CCRN catchment at >200 COG institutions by demographic characteristics, diagnosis, and geographic location to determine whether the CCRN can serve as a population-based registry for childhood cancer.
During 2009 to 2011, 18,580 US children newly diagnosed with cancer were registered in the CCRN. These observed cases were compared with age-specific, sex-specific, and race/ethnicity-specific expected numbers calculated from Surveillance, Epidemiology, and End Results (SEER) Program cancer incidence rates and 2010 US Census data.
Overall, 42% of children (18,580 observed/44,267 expected) who were diagnosed with cancer at age <20 years were registered in the CCRN, including 45%, 57%, 51%, 44%, and 24% of those diagnosed at birth, ages 1 to 4 years, ages 5 to 9 years, ages 10 to 14 years, and ages 15 to 19 years, respectively. Some malignancies were better represented in the CCRN (leukemia, 59%; renal tumors, 67%) than others (retinoblastoma, 34%). There was little evidence of differences by sex or race/ethnicity, although rates in nonwhites were somewhat lower than rates in whites.
Given the low observed-to-expected ratio, it will be important to identify challenges and barriers to registration to improve case ascertainment, especially for rarer diagnoses and older age groups; however, it is encouraging that some diagnoses in younger children are fairly representative of the population. Overall, the CCRN is providing centralized, real-time access to cases for research and could be used as a model for other national cooperative groups. Cancer 2014;120:3007–3015. © 2014 American Cancer Society.