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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-approved cancer programs in the United States and Puerto Rico. Some 75% 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 20 million records from hospital cancer registries across the United States. These data are used to explore trends in cancer care, create regional and state benchmarks for participating hospitals, and to serve as the basis for quality improvement.
Data on all types of cancer are tracked and analyzed. Data collected include patient characteristics, tumor staging and histology characteristics, type of first course treatment administered, disease recurrence, and survival information. These data elements are collected and submitted to the NCDB from CoC-Approved Cancer Program registries using nationally standardized data item and coding definitions, as specified in the CoC's Facility Oncology Registry Data Standards: Revised for 2007 (FORDS), and nationally standardized data transmission format specifications as specified by the North American Association of Central Cancer Registries (NAACCR). Hypothesis-based special studies are conducted that allow for the ad hoc collection of specific data to address important cancer problems. Participation by CoC- approved 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). Data confidentiality is of prime importance, and the NCDB has pro-actively worked to continually ensure and maintain compliance with the Health Insurance Portability and Accountability Act (HIPAA) of 1996 privacy regulations established by the Federal Government in 2003.
Quality Integration Committee and Disease Site Teams
The NCDB operates under the guidance of the Quality Integration Committee (QIC). The QIC acts as the central advisory panel for the NCDB, guiding and assisting in the prioritization of the 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 care of cancer patients. The committee directs and oversees the activities of the Disease Site Teams (DSTs) that include conducting research using NCDB resources, developing focused studies and educational interventions, and evaluating the quality of cancer registry data.
These teams are multidisciplinary groups of 12-16 physicians from the spectrum of cancer care. Several member organizations of the CoC, including the American Society for Clinical Oncology, the Society for Surgical Oncology, the American Society for Therapeutic Radiology and Oncology, the American College of Radiology, the College of American Pathologists, and the Central Brain Tumor Registry of the United States have been instrumental in nominating national experts to these teams.
Specifically, the QIC is responsible for:
- Reviewing and prioritizing the proposals put forth by the DSTs based on merit
- Setting goals and priorities of the research programs of the CoC
- Overseeing the activities of the DSTs
- Identifying, recommending, and approving the membership composition of the CoC's DSTs
The Disease Site Teams (DSTs) address the national demand for ongoing assessment of the quality of cancer care. The purpose of the DSTs is to:
- Conduct research using NCDB resources
- Develop focused studies
- Develop educational interventions including program content and speaker recommendations
- Evaluate the quality of cancer registry data
- Collaborate with other national leaders and agencies in cancer care
The following list details DST sites and committee leadership.
Disease Site Teams and Leadership Assignments
Breast
Kirby Bland, MD (leader) – University of Alabama at Birmingham
Robert Kuske, MD (associate leader) – Scottsdale, AZ
George Sledge, MD (associate leader) – University of Indiana
Colorectal
Bruce Minsky, MD (leader) – Memorial Sloan Kettering
Heidi Nelson, MD (associate leader) – Mayo Clinic, Rochester MN
Jean Grem, MD (associate leader) – University of Nebraska
Gynecologic Oncology
Thomas W. Burke, MD (leader) – University of Texas, MD Anderson Cancer Center
Maurie Markman, MD (associate leader) – Cleveland Clinic
Gillian Thomas, MD (associate leader) – Toronto
Head and Neck
Corey Langer, MD (leader) – Fox-Chase Cancer Center
Randal Weber, MD (associate leader) – University of Texas, MD Anderson Cancer Center
Jay Scott Cooper, MD (associate leader) – Brooklyn, New York
Intracranial and Central Nervous System
Frederick Barker, MD (leader) – Massachusetts General Hospital
Herbert Engelhard, MD (associate leader) – University of Illinois-Chicago
Roger McClendon, MD (associate leader) – Duke University
Liver
Yuman Fong, MD (leader) – Memorial Sloan Kettering
Alan Venook, MD (associate leader) – University of California, San Francisco
Robert Bree, MD (associate leader) – Mukilto, WA
Melanoma
Daniel Coit, MD (leader) – Memorial Sloan Kettering
Jeff Weber, MD (associate leader) – University of Southern California
Matthew Ballo, MD (associate leader) – University of Texas, MD Anderson Cancer Center
Pancreas
Jeffrey Drebin, MD (leader) – Washington University, Saint Louis, MO
Ross Abrams, MD (associate leader) – John Hopkins
Alec Megibow, MD (associate leader) – New York University
Sarcoma
Peter W. T. Pisters, MD (leader) – University of Texas, MD Anderson Cancer Center
Brian O'Sullivan, MD (associate leader) – Princess Margaret, Toronto, Ont.
Laurence Baker, DO (associate leader) – University of Michigan
Thoracic Oncology
James Bonner, MD (leader) – University of Alabama at Birmingham
David Harpole, MD (associate leader) – Duke University
Jeff Crawford, MD (associate leader) – Duke University
Upper GI
Carol Scott-Conner, MD (leader) – University of Iowa Hospital and Clinics
Richard Goldberg, MD (associate leader) - University of North Carolina, Chapel Hill
Leonard Gunderson, MD (associate leader) – Mayo Clinic, Scottsdale, AZ
Urology
Peter Carroll, MD (leader) – University of California, San Francisco
Jeff Michalski, MD (associate leader) – Washington University
David Nanus, MD (associate leader) – New York Presbyterian
Upper GI
Carol Scott-Conner, MD (leader) – University of Iowa Hospital and Clinics
Richard Goldberg, MD (associate leader) - University of North Carolina, Chapel Hill
Leonard Gunderson, MD (associate leader) – Mayo Clinic, Scottsdale, AZ
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 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. In addition, 20 reports based on special studies have been published.
CoC Surveillance Studies
The DSTs are chiefly responsible for prioritizing and guiding disease-specific surveillance studies based on NCDB data that may significantly impact the quality of cancer patient care. These studies make use of existing NCDB data and are designed to examine trends in diagnosis, treatment and outcomes based upon current interests and impact on the oncology community. Findings are published in peer- reviewed scientific journals and are available for reference.
Commission on Cancer
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