title: The Children's Oncology Group Childhood Cancer Research Network (CCRN): case catchment in the United States.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Epidemiology and Clinical Research, Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota.
authors.forename: Jessica R B
authors.initials: JR
authors.lastname: Musselman
authors.forename: Logan G
authors.initials: LG
authors.lastname: Spector
authors.forename: Mark D
authors.initials: MD
authors.lastname: Krailo
authors.forename: Gregory H
authors.initials: GH
authors.lastname: Reaman
authors.forename: Amy M
authors.initials: AM
authors.lastname: Linabery
authors.forename: Jenny N
authors.initials: JN
authors.lastname: Poynter
authors.forename: Susan K
authors.initials: SK
authors.lastname: Stork
authors.forename: Peter C
authors.initials: PC
authors.lastname: Adamson
authors.forename: Julie A
authors.initials: JA
authors.lastname: Ross
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005006:Ethnicity / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D015994:Incidence; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000453:epidemiology* / Q000208:ethnology / Q000401:mortality; D012042:Registries; D018426:SEER Program; D015996:Survival Rate; D014481:United States / Q000453:epidemiology; D055815:Young Adult
keywords: United States; catchment; childhood cancer; clinical trials; incidence