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The National Cancer Data Base (NCDB), a joint program of the Commission on Cancer (CoC) and the American Cancer Society (ACS), is a nationwide oncology outcomes database for more than 1,400 Commission-accredited cancer programs in the United States and Puerto Rico. Some 70 percent of all newly diagnosed cases of cancer in the United States are captured at the institutional level and reported to the NCDB. The NCDB, begun in 1989, now contains approximately 25 million records from hospital cancer registries across the United States. Data on all types of cancer are tracked and analyzed. These data are used to explore trends in cancer care, to create regional and state benchmarks for participating hospitals, and to serve as the basis for quality improvement.
Data elements are collected and submitted to the NCDB from CoC-accredited cancer program registries using nationally standardized data item and coding definitions, as specified in the CoC's Facility Oncology Registry Data Standards, and nationally standardized data transmission format specifications coordinated through by the North American Association of Central Cancer Registries. This includes patient characteristics, cancer staging and tumor histological characteristics, type of first course treatment administered, and outcomes information.
The NCDB maintains a number of Web-based data applications that have been developed to promote access to NCDB data. These tools are for use by CoC-accredited cancer programs as a means by which to evaluate and compare the cancer care delivered to patients diagnosed and/or treated at their facility with that provided at state, regional, and national cancer facilities. Included among these reporting applications are the following:
- Benchmark Hospital Comparison Reports allow users access to almost 8.3 million case reports of patients diagnosed between 2000 and 2007, from which reports can be generated showing data reported to the NCDB from the user’s own cancer registry; aggregated data by hospital system, state, or region or at the national level; or a comparison of the cases submitted to the NCDB by the user's cancer program and all the other programs identified by the user in the comparative group.
- NCDB Survival Reports, which provide access to American Joint Committee on Cancer (AJCC) stage-stratified, five-year observed survival rates for all cancer sites, allow users to generate survival reports filtered by primary site of the cancer, diagnosis period, geographic location of CoC-approved cancer programs, and cancer program category or corporate affiliation. Users can even generate program-specific results. Computed results are available for cases diagnosed between 1994–1997 (AJCC 4th ed.) or 1998–2002 (AJCC 5th ed.).
- Cancer Program Practice Profile Reports provide CoC-accredited programs with comparative information to assess adherence to standard of care therapies for breast and colorectal cancers, including measures endorsed by the National Quality Forum (NQF) and developed in collaboration with the American Society of Clinical Oncology and the National Comprehensive Cancer Network.
- The Rapid Quality Reporting System is the most recently launched reporting tool that provides real clinical time assessment of hospital level performance using NQF-endorsed quality of cancer care measures for breast and colorectal cancers.
On occasion, hypothesis-based special studies are conducted that allow for the ad hoc collection of specific data to address important cancer problems. Participation by CoC-accredited cancer programs in these studies is mandated by the CoC Cancer Program Standards. Thus, the NCDB collects the traditional data set (longitudinal) and one-time and ad hoc data sets (cross-sectional). The NCDB is also actively engaged in supporting the development of clinical trials through assisting cooperative groups (40K PDF) with targeting accruals initiatives.
Data confidentiality is of prime importance, and the NCDB has proactively worked to continually ensure and maintain compliance with the Health Insurance Portability and Accountability Act of 1996, privacy regulations established by the federal government.
The NCDB operates under the guidance of the Quality Integration Committee (QIC). The QIC acts as the central advisory panel for the NCDB, directing and assisting in the prioritization of work conducted by the NCDB staff. This committee is concerned with and represents the CoC in matters addressing the progress and direction of research and continuing education as it pertains to improving the quality of care provided to cancer patients in CoC-accredited programs. In addition, the NCDB maintains close working relationships with a number of national cancer surveillance programs, including federal agencies and the American Cancer Society.
Since its inception, the NCDB has matured as a clinical surveillance mechanism, and a continuous review of NCDB data on patterns of care and outcomes has been maintained. This has included the publication of findings in scientific papers (100K PDF) as appropriate, feedback to hospitals in the form of benchmark summary information, and descriptive statistical information updates to this Web site. The peer-reviewed publication effort has generated 350 articles since 1990, most frequently concerning patterns of care and outcomes for specific disease sites.
Revised June 2, 2010
Commission on Cancer
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