What is the NCDB?

The National Cancer Data Base (NCDB) is a nationwide, facility-based, oncology data base that currently captures 75% of all newly diagnosed cancer cases in the United States annually, and holds information on over 20 million cases of reported cancer diagnoses since 1985, and continues to grow. Operations of the NCDB are jointly supported by the Commission on Cancer (CoC) of the American College of Surgeons (ACoS) and the American Cancer Society (ACS). 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 serves as a comprehensive clinical surveillance resource for cancer care in the United States and 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 CoC, the purpose of the NCDB is to improve the quality of cancer care by providing facility based cancer care team 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.

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).

Since its inception, patterns of care and outcome findings have been documented in approximately 400 scientific papers, as feedback to hospitals in the form of benchmark summary information, and descriptive statistical information updates posted to the CoC Web site.  Site-specific analysis and research is directed by physician-led Disease Site Teams responsible for surveillance research and overseeing special studies requiring facility participation.

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.

How can I Access the National Cancer Data Base?

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 Overview

The NCDB is the world’s largest clinical database with approximately 20 million cancer cases.  CLPs can utilize this data to study patterns of diagnosis, first course treatment, and long-term patient outcomes at the local and state level.  Users can compare their own facility’s data to an aggregate group in their own state and make state comparisons to national trends. 

If you do not yet have access to your CoC-approved program NCDB data, please contact CoCDatalinks@facs.org. 

NCDB Public Benchmark Reports: Users are provided access to data from the six most recent diagnosis years, averaging slightly more than 3.5 million cases, and can analyze cases by:

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.

NCDB Hospital Comparison Benchmark Reports*: Approximately 3 million cases for the most recently data to the NCDB are available on the Web through the NCDB Hospital Comparison Benchmark Reports. These reports include data for 61 analytic cancer sites and have more co-variates from which to choose. Users can generate three different types of reports showing:

• Hospital Specific Reports - data reported to the NCDB from their own cancer registry
• Aggregated Data Reports - data aggregated by hospital system, state, region, or the nation
• Comparison Data Reports - comparison reports of the user's cancer program’s data and all the other programs identified by the user in the comparative group.

Cancer Program Practice Profile Reports (CP3R)*: The web-based CP3R grants local providers with comparative information to assess adherence and consideration of standard of care therapies for major cancers. Using information routinely captured by hospital based cancer registries and reported to the NCDB, the first CP³R examines facility-specific utilization of adjuvant chemotherapy (ACT) following the resection of Stage III cancers of the colon. Additional CP3R projects are planned for the future, focusing on colon, rectal and breast cancers.

This project seeks to implement concepts of continuous practice improvement to improve quality of patient care at the local level and permits hospitals to compare their care for these patients relative to that of other providers. The aim is to empower clinicians, administrators and other staff to work collaboratively to identify problems in practice and delivery, and to implement best practices that will diminish disparities in care across CoC-Approved cancer programs.

*Access to the hospital benchmark and practice profile reports is limited to authorized persons affiliated with CoC-approved cancer programs through the CoC Datalinks system.

Electronic Quality Improvement Packets (e-QuIP): This exciting, new, Web-based application provides individualized case summary reports for breast cancers diagnosed in 2003 and 2004, as submitted to the NCDB by each CoC-approved cancer program.  The e-QuiP includes cases based on the following measurements:

• Patients undergoing breast conserving surgery and who are under the age of 70 should receive or be considered for radiation therapy.
• Patients with Stage I (tumor size > 1cm and N0) or Stage II/III (any tumor size and N+) with ER/PR- tumors should receive or be considered for combination chemotherapy.
• Patients with Stage I (tumor size > 1 cm and N0) or Stage II/III (any tumor size and N+) with ER+ or PR+ tumors should receive or be considered for hormonal therapy (Tamoxifen or third generation Aromatase Inhibitor).

ACTION: CLPs are encouraged to review the e-QuIP for breast cancer and become involved in the following activities:

• Identify areas for improvement related to laboratory results and physician documentation.  Review the following for completeness:
  • clinical and pathologic diagnosis (pathology)
  • surgical, neoadjuvant and adjuvant treatment information
  • medical oncology, radiation oncology and complete documentation with reason for referral by surgeon, as applicable
  • documentation of patient/caregiver refusal, patient risk factors precluding treatment, etc.
• Serve as clinical champion (or recruit clinical champion) to disseminate information and educational materials related to standard of care guidelines and facility’s data.
• Work with the cancer registry to review data appearing on the online e-QuIP.
• Review e-QuIP at the following venues:
  • Cancer conference
  • Continuing medical education programs
  • Specialty-specific and hospital department meetings
  • Medical staff office managers
• Provide an example of e-QuIP and an explanation of tools that will be used to improve documentation
  • Alignment for upcoming CP3R’s
  • Concordance may affect future pay for performance initiatives

The Commission has also released the e-QuIP for Colon and Rectal cancers.  Cancer program specific estimated performance rates with two quality of care measures are provided:  1) the extent of regional lymph node examination following surgical resection of colon cancers, and 2) the clinical management of stage II/III rectal cancer with radiation therapy.  These reports will serve as a precursor to the release of additional CP³Rs.  With the National Quality Forum's (NQF) endorsement of breast and colorectal cancer care measures, and the Centers for Medicare and Medicaid Services (CMS) exploring precursors to pay-for-performance (P4P), the CoC is well positioned to assist CoC-approved cancer programs and CLPs in preparing for the arrival of these quality-focused measures.

Further information, including overviews and interpretation guides, is available on-line for both the CP3R and e-QuIP.  For more information contact the NCDB at NCDB@facs.org.

How does the National Cancer Data Base Impact Local Patient Care?

The NCDB activities are linked with the CoC’s 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.