The National Cancer Data Base (NCDB) was established to serve as a comprehensive clinical surveillance resource for cancer care in the United States. The NCDB was the first national database used to track and compare the treatment of most types of cancers. Working in conjunction with other activities of the Commission on Cancer (CoC), the purpose of the NCDB is to improve the quality of cancer care by providing physicians, cancer registrars, and others with the means to compare their management of cancer patients with the way in which similar patients are managed in other cancer care centers around the country.

The American Cancer Society (ACS) and the CoC of the American College of Surgeons (ACoS) have maintained a long-standing partnership in the fight against cancer. The working relationship between the College and the American Cancer Society is one of the oldest health alliances in the United States, beginning in 1912 at a series of meetings that led to the formation of these two organizations. The ACS and the ACoS jointly fund the activities of the NCDB. The NCDB was established in 1989 by these two organizations to provide important information to individuals and institutions interested in the care of cancer patients.

The NCDB is a nationwide, facility-based, oncology data set that currently captures 75% of all newly diagnosed cancer cases in the United States annually, and holds information on over 15 million cases of reported cancer diagnoses for the period 1985 through 2002, and continues to grow. 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 2004 (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

Thirteen 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

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

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

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

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

Thyroid/Parathyroid

Ashok Shaha, MD (leader) – Memorial Sloan Kettering

David Seidenwurm, MD (associate leader) – Sacramento, CA

Virginia LiVolsi, MD (associate leader) – University of Pennsylvania

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

Breast

Kirby Bland, MD (leader) – University of Alabama

Robert Kuske, MD (associate leader) – Scottsdale, AZ

George Sledge, MD (associate leader) – University of Indiana

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

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

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

Thoracic Oncology

James Bonner, MD (leader) – University of Alabama

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

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

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 the ACoS 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.

NCDB Interactive, Web-Based Analytic Tools

The NCDB maintains a number of Web-based benchmarking applications that have been developed to promote access to NCDB data by the general public, researchers, and clinicians. The NCDB Benchmark Reports have been released in two formats: one designed explicitly to facilitate public use; a second for use by CoC-approved cancer programs as a tool by which to evaluate and compare the cancer care delivered to patients diagnosed and/or treated at their facility versus state, regional, and national level.

• NCDB Public Benchmark Reports: These reports include the eleven most commonly diagnosed solid tumors in the United States. Users are provided access to data from six diagnosis years (1997-2001), slightly more than 3.5 million cases. Users can design queries using data from any one or a combination of three types of hospitals (community, comprehensive community, and academic/teaching facilities), and specify a geographic region or state to narrow the scope of their analysis. As many as three co-variates (including patient age, ethnicity, sex, tumor histology, stage, first course therapy and type of surgical resection) are available for users to define the type of information they wish to review. Additionally, a companion reporting tool, the NCDB Survival Reports, is also available which allows access to site-specific AJCC stage-stratified five-year observed survival rates is also available for public use.
  
  Tip Sheet for Creating NCDB Benchmark Reports (80K PDF)

• NCDB Hospital Comparison Benchmark Reports: Access to these reports is limited to authorized persons affiliated with CoC-approved cancer programs. Approximately 1.8 million cases diagnosed in 2000 and 2001 are available as part of the NCDB Hospital Comparison Benchmark Reports. In contrast to the public NCDB Benchmark Reports described above, these reports include data for all types of cancer (categorized into 61 different analytic types). Users are allowed greater control over the type of cases selected and have more co-variates from which to select. In addition, users can generate three different types of reports showing: 1) data reported to the NCDB from their own cancer registry; 2) aggregated data by hospital system, state, region, or at the national level; 3) 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.
  
  Tip Sheet for Creating NCDB Hospital Comparison Benchmark Reports (80K PDF)

Click here for a comparison guide (10K PDF) detailing the functionality and utility of both Web tools.

Working With Physicians at the Local Level

The NCDB activities are linked with the CoC Cancer Liaison Physicians for purposes of clinical surveillance and quality control. This national physician network, working in combination with hospital cancer registrars, facilitates use of NCDB data to improve patient care at the local level. The availability and use of the benchmarking tools underscores the importance of the hospital registrar in clinical surveillance and quality improvement. The NCDB helps to identify disparities in care at the local and national levels, further demonstrating that the NCDB influences patient care in 50 states including Guam and Puerto Rico, and impacts Americans of all regions and subpopulations.

For more information, contact the NCDB at NCDB@facs.org or call 312-202-5085.

 

Revised February 18, 2008