Welcome to the 2016 PUF Data Dictionary
This version of the data dictionary is applicable to the most recent version of the PUF, containing cases diagnosed in 2004-2016. If you have an earlier version of a PUF data file, please use the appropriate version of the data dictionary, found in the Revisions tab.
The NCDB Participant Use Data File (PUF) is a Health Insurance Portability and Accountability Act (HIPAA) compliant data file containing cases submitted to the Commission on Cancer’s (CoC) National Cancer Data Base (NCDB). The PUF contains de-identified patient level data that do not identify hospitals, healthcare providers, or patients as agreed to in the Business Associate Agreement that each CoC-accredited program has signed with the American College of Surgeons. The PUFs are designed to provide investigators associated with CoC-accredited cancer programs with a data resource they can use to review and advance the quality of care delivered to cancer patients through analyses of cases reported to the NCDB. NCDB PUFs are only available through an application process to investigators associated with CoC-accredited cancer programs. The Request for Applications occurs on a semi-annual basis.
- The next application period will open January 2019.
- PUFs awarded during the next call will be organ-site specific, per the research interests of the successful investigator, and include cases diagnosed 2004-2016.
- PUFs are made available in flat text files and are accompanied by SAS, STATA, and SPSS scripts to assign value and variable labels.
Information for Winter 2019 Request for Applications for the 2016 PUF
Please read the following documents before beginning your application:
General Instructions for Potential NCDB PUF Applicants
This document provides an overarching description of what investigators should anticipate as they plan their project proposals and prepare their application for access to the NCDB PUF.
*NEW* This page contains answers to commonly asked questions about the PUF.
NCDB PUF Application Elements
This document is provided as a reference to allow investigators to prepare their project proposals in advance of submitting their NCDB PUF application on-line via the NCDB PUF Application Manager. No facsimile or mailed copy of the application will be accepted.
NCDB PUF Data Use Agreement
The NCDB PUF Data Use Agreement (DUA) is provided as a reference. The investigator will need to check if this DUA needs to be reviewed by an attorney. In advance of downloading awarded PUFs, investigators will be required to electronically accept the terms and conditions of the DUA.
NCDB Participant Use File (PUF) Purpose and Terms of Agreement
The Participant Use File (PUF) program supports investigators at CoC-accredited institutions to conduct research derived from the NCDB. The Purpose and Terms of Agreement document must be electronically signed by the PI upon beginning each PUF application.
Securing Log-In Credentials for the NCDB PUF Application Manager
Investigators interested in applying for an NCDB PUF must be affiliated with a CoC-accredited cancer program. The NCDB PUF Application Manager requires obtaining log-in credentials to CoC Datalinks. The steps required to obtain a username and password for CoC Datalinks are outlined on the Manage Staff Contacts page and include information on adding/removing roles and editing contact information.
NOTE: Interested investigators must have the designated role of “NCDB PUF Applicant” in order to access the NCDB PUF Application Manager; if not, they will be blocked without this role assignment. This designation does not allow an investigator access to a cancer program’s SAR or any other information available through CoC Datalinks. Please contact your cancer registry staff or whoever manages staff contacts in CoC Datalinks for your cancer program for assistance in securing these credentials.
NCDB PUF Data Dictionary
The current release of the NCDB PUF is documented in this on-line data dictionary and includes: overview documentation describing the PUFs, detailed documentation of the specific items included in the PUFs, and a list of investigators who have participated in testing phases of the PUF.
NCDB PUF Application Manager
Use the link above to start or manage your PUF application. Applications do not have to be completed in one sitting, and can be saved and revised through the request for applications due date. The status of submitted proposals can be tracked. Awarded PUFs will be available through the Application Manager. Note: The application manager has been updated. If you have applied for a PUF in the past, please clear the cache on your browser and refresh the application manager page so that the updates may be applied to your new applications. Contact your facility’s IT department if you need assistance in clearing your cache.
Questions regarding the NCDB PUF or the application process for a PUF may be directed to NCDB technical staff at NCDB_PUF@facs.org.