National Cancer Data Base PUF

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 1,500 hospitals with Commission-accredited cancer programs in the United States (US) and Puerto Rico. Some 70 percent of all newly diagnosed cases of cancer in the US are diagnosed and treated at CoC-accredited cancer programs and reported to the NCDB. The NCDB, begun in 1989, contains case reports on over 30 million cancers diagnosed between 1985 and 2011. These data are used to explore trends in cancer care, create regional and state benchmarks for participating hospitals, and 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 (NAACCR). This includes patient characteristics, cancer staging and tumor histological characteristics, type of first course treatment administered, and outcomes information.
This on-line data dictionary is designed to provide investigators with detailed documentation of the data items included in the NCDB PUF. This dictionary should be consulted to ensure that patient cohorts can be satisfactorily indentified and planned analyses can be accomplished with the items provided in the PUFs. The Data Dictionary provides a wealth of information describing data item definitions, coding instructions followed by cancer registrars when information is abstracted from patient charts and records, code values, and labels. Data items in the NCDB PUF adhere to consistent naming conditions, derived from the NAACCR. Links to other supporting documentation as well at the web-sites of the American Joint Committee on Cancer (AJCC), Surveillance, Epidemiology and End Results (NCI-SEER), National Program of Cancer Registries (CDC-NPCR), and NAACCR are also provided to allow investigators broad access to additional supporting documentation or information related to the data collected through the cancer registry systems of North America.
Data confidentiality is of prime importance. The NCDB proactively works to continually ensure and maintain compliance with the Health Insurance Portability and Accountability Act of 1996 (HIPAA), privacy regulations established by the federal government. The American College of Surgeons (ACoS) has entered into a Business Associate Agreement with each of our CoC-accredited programs in which the ACoS agrees to comply with the applicable provisions of the HIPAA Security Rule and the Privacy Rule and the additional requirements mandated by the Health Information Technology for Economic and Clinical Health Act of 2009 (H.I.T.E.C.H.).
Since its inception a continuous review of NCDB data on patterns of care and outcomes has been maintained. This includes the publication of findings in over 350 peer-reviewed scientific papers since 1990.
The NCDB operates under the guidance of the Quality Integration Committee (QIC) of the CoC. The QIC acts as the central advisory panel for the NCDB, directing and assisting in the prioritization of its work. 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.