The National Cancer Database (NCDB) Participant User Data File (PUF) is a Health Insurance Portability and Accountability Act (HIPAA)-compliant data file containing cases submitted to the Commission on Cancer’s (CoC) NCDB. The PUF contains de-identified patient level data that do not identify hospitals, health care providers, or patients as agreed to in the Business Associate Agreement that each CoC-accredited program has signed with the American College of Surgeons. The PUFs are designed to provide investigators associated with CoC-accredited cancer programs with a data resource they can use to review and advance the quality of care delivered to cancer patients through analyses of cases reported to the NCDB. NCDB PUFs are only available through an application process to investigators associated with CoC-accredited cancer programs. The Request for Applications is open year round, and PUFs are referred to by their most recent year of diagnosis included in the data file. PUFs are made available in flat text files and are accompanied by SAS and SPSS file scripts to assign value and variable labels.
Recommended Readings
It is recommended to review the following literature demonstrating the impact of the Covid-19 pandemic on reporting to the NCDB. Coverage estimates to the US population are additionally available for background and citation.
- Palis BE, Janczewski LM, Browner AE, Cotler J, Nogueira L, Richardson LC, Benard V, Wilson RJ, Walker N, McCabe RM, Boffa DJ, Nelson H. The National Cancer Database Conforms to the Standardized Framework for Registry and Data Quality. Ann Surg Oncol. 2024 May 8. doi: 10.1245/s10434-024-15393-8. Epub ahead of print. PMID: 38717542.
- Janczewski LM, Cotler J, Merkow RP, et al. Alterations in Cancer Treatment During the First Year of the COVID-19 Pandemic in the US. JAMA Netw Open. 2023;6(10):e2340148. doi:10.1001/jamanetworkopen.2023.40148
- Lum SS, Browner AE, Palis B, et al. Disruption of National Cancer Database Data Models in the First Year of the COVID-19 Pandemic. JAMA Surg. 2023;158(6):643–650. doi:10.1001/jamasurg.2023.0652
- Nogueira LM, Palis B, Boffa D, Lum S, Yabroff KR, Nelson H. Evaluation of the Impact of the COVID-19 Pandemic on Reliability of Cancer Surveillance Data in the National Cancer Database. Ann Surg Oncol. 2023 Apr;30(4):2087-2093. doi: 10.1245/s10434-022-12935-w. Epub 2022 Dec 20. PMID: 36539579; PMCID: PMC9767395.
