The NCDB and Childhood Cancer

The National Cancer Database (NCDB) receives information from across the country and centers contribute their cancer patient information. While the majority of the NCDB comprises adults with cancer, the database also includes children that develop cancer. It is estimated that the NCDB collects information from 42 percent of all pediatric cancer patients in the country.1 Public access for researchers at CoC-accredited cancer programs to the dataset known as the Participant User File (PUF) began in 2013.

Researchers at children’s hospitals across the country used this valuable resource to identify best practices, create standards and measures, and raise the level of care for childhood cancer. According to a current Pubmed search for all “pediatric” and “national cancer database” papers, there are 42 publications. The top 10 cited papers according to Clarivate Analytic’s Web of Science are listed below as of 2021.1-10

Papers initially focused on children that developed typically adult-type tumors. More recently, this has expanded to include hematogenous malignancies and brain tumors. The unique aspect of the NCDB includes its extensive fields including socioeconomic information, the treatments, and outcomes which make it an outstanding resource. Researchers look forward to adding items in the future such as pediatric staging which is distinct from the AJCC and would further make the NCDB an even more powerful resource.

 

Top 10 Pediatric NCDB Papers (as of May 2021)

  1. Grovas A, Fremgen A, Rauck A, et al. The National Cancer Data Base report on patterns of childhood cancers in the United States. 1997 Dec 15;80(12):2321-32.
  2. Fischer-Valuck BW, Chen I, Srivastava AJ, et al. Assessment of the treatment approach and survival outcomes in a modern cohort of patients with atypical teratoid rhabdoid tumors using the National Cancer Database. 2017 Feb 15;123(4):682-687.
  3. Lorimer PD, White RL, Walsh K, et al. Pediatric and Adolescent Melanoma: A National Cancer Data Base Update. Ann Surg Oncol. 2016 Nov;23(12):4058-4066.
  4. Poles GC, Clark DE, Mayo SW, et al. Colorectal carcinoma in pediatric patients: A comparison with adult tumors, treatment, and outcomes from the National Cancer Database. J Pediatr Surg. 2016 Jul;51(7):1061-6.
  5. Gulack BC, Rialon KL, Englum BR, et al. Factors associated with survival in pediatric adrenocortical carcinoma: An analysis of the National Cancer Data Base (NCDB). J Pediatr Surg. 2016 Jan;51(1):172-7.
  6. Rojas Y, Shi YX, Zhang W, et al. Primary malignant pulmonary tumors in children: a review of the national cancer data base. J Pediatr Surg. 2015 Jun;50(6):1004-8.
  7. Rao YJ, Hassanzadeh C, Fischer-Valuck B, et al. Patterns of care and treatment outcomes of patients with Craniopharyngioma in the national cancer database. J Neurooncol. 2017 Mar;132(1):109-117.
  8. Stokes CL, Stokes WA, Kalapurakal JA, et al. Timing of Radiation Therapy in Pediatric Wilms Tumors: A Report From the National Cancer Database. Int J Radiat Oncol Biol Phys. 2018 Jun 1:101(2):453-461.
  9. Rialon KL, Gulack BC, Englum BR, et al. Factors impacting survival in children with renal cell carcinoma. J Pediatr Surg. 2015 Jun;50(6):1014-8.
  10. Dressler EV, Dolecek TA, Liu M, et al. Demographics, patterns of care, and and survival in pediatric medulloblastoma. J Neurooncol. 2017 May;132(3):497-506. 
Kenneth W. Gow, MD, MSc, MHA, FRCSC, FACS, FAAP

Kenneth W. Gow, MD, MSc, MHA, FRCSC, FACS, FAAP

Professor of Surgery

Division of Pediatric General & Thoracic Surgery 
Seattle Children’s Hospital and the University of Washington

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