An Updated Assessment of 43,110 Patients Enrolled in the Childhood Cancer Research Network: A Children’s Oncology Group Report

Authors

Austin L Brown
Pagna Sok
Michael E Scheurer
Karen R Rabin
Erin L Marcotte
Douglas S Hawkins
Logan G Spector
Philip J Lupo

Publication Date

7-15-2022

Journal

Cancer

DOI

10.1002/cncr.34248

PMID

35482017

PMCID

PMC9233076

PubMedCentral® Posted Date

7-15-2023

PubMedCentral® Full Text Version

Author MSS

Published Open-Access

yes

Keywords

Censuses, Child, Forecasting, Humans, Incidence, Male, Neoplasms, Registries, childhood cancer, clinical trial, research participation, epidemiology, cancer registry

Abstract

Background: The Childhood Cancer Research Network (CCRN) was established by the Children's Oncology Group (COG) as a resource for epidemiologic studies of childhood cancer. The objective of this study was to evaluate the representativeness of CCRN and identify factors associated with enrollment.

Method: The number of US childhood patients with cancer diagnosed < 20 years of age enrolled in CCRN (2008-2015) was compared to expected counts, calculated from Surveillance, Epidemiology, and End Results incidence rates and US Census population estimates. Observed-to-expected ratios and corresponding 95% confidence intervals (CI) were estimated across sex, race, diagnosis age, calendar year, and cancer diagnosis groups. Multivariable linear regression models were generated to evaluate the association between open COG phase 3 therapeutic trials and CCRN enrollment rates.

Result: The 43,110 cases enrolled in CCRN represented 36% of the expected childhood cancers diagnosed from 2008 to 2015 (N = 120,118). CCRN enrollment ratios [95% CI] were highest among males (0.38 [95% CI, 0.37-0.38]), non-Hispanics (0.35 [95% CI, 0.35-0.36]), and those diagnosed from 1 to 4 years of age (0.50 [95% CI, 0.50-51]). Enrollment ratios varied by diagnosis group, with leukemia, myeloproliferative diseases, myelodysplastic diseases (0.55 [95% CI, 0.54-0.55]), and renal tumors (0.55 [95% CI, 0.53-0.58]) having the highest enrollment. After adjusting for year of diagnosis and cancer diagnosis, there was a 3.1% [95% CI, 0.6-5.6%] increase in CCRN enrollment during windows of open COG therapeutic trials.

Conclusions: Despite enrolling only 36% of newly diagnosed cases, CCRN remains a valuable resource for investigators conducting childhood cancer etiology and survivorship research. The results of this study may inform efforts to improve enrollment on current and future COG nontherapeutic registry protocols.