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, health care 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 NCDB is extending the opportunity to investigators at CoC-accredited cancer programs to apply for a PUF on a semi-annual basis
- The 2015 initial application period is January 5–February 6, 2015, for any investigator from a CoC-accredited cancer program.
- Awarded PUFs accepted will be released to investigators April 1, 2015.
- PUF awarded during the January call will be organ-site specific, per the research interests of the successful investigator, and include cases diagnosed between 1998 and 2012.
- A second application period will be open in July 2015 and will include cases diagnosed between 1998 and 2013.
- PUFs are made available in SAS,SPSS, and STATA file formats.
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.
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 online 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 stated herein.
NCDB PUF Purpose and Terms of Agreement
The PUF program supports investigators at CoC-accredited institutions to conduct research derived from the NCDB. The purpose and Terms of Agreement document must be signed and uploaded prior to submitting a 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 CoCDatalinks. The steps required to obtain a username and password for CoCDatalinks are outlined on the Manage Staff Contacts page and include information on adding/removing roles and editing contact information.
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 CoCDatalinks. 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 online 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
Begin here 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, February 6, 2015. The status of submitted proposals can be tracked. Awarded PUFs will be available through the Application Manager.
Questions regarding the NCDB PUF or the application process for a PUF may be directed to NCDB technical staff at NCDB_PUF@facs.org.