VPR-CLS linkage process
The Virtual Pooled Registry Cancer Linkage System (VPR-CLS) is designed to facilitate research linkages with multiple cancer registries. The VPR-CLS provides a single location for linkage application and review, transmission of a single cohort file, use of standardized linkage software, and exchange of linkage results. The VPR-CLS linkages result in a report of the number of high quality and manual review matches, by diagnosis year, found in each registry. This information will allow researchers to prioritize which registries to approach for release of record level data on the matches. NAACCR is developing methods to simplify the IRB application process, including a templated IRB form and creation of a Central IRB dedicated to cancer registry linkage studies.
While the VPR-CLS activities to streamline the IRB application process are being completed, researchers requesting patient-level data will continue to work directly with individual registries. Our partners at the Centers for Disease Control and Prevention’s National Program of Cancer Registries (NPCR) have captured a wealth of information on cancer registry data access requirements, including cancer registry and IRB contacts, laws and regulations, IRB requirements, and detailed state-specific processes for data requests.
You can click here to learn more about the information collected by CDC and request access to the CDC IRB Assistance SharePoint site.
DESCRIPTION OF THE VPR-CLS LINKAGE PROCESS
The VPR-CLS is still in the development and testing phase; however, once the system is launched, the general process will proceed as follows:
- Researcher submits application using web-based VPR-CLS form.
- Application is reviewed by NAACCR and Research Review Committee and researcher is notified of decision and/or any questions.
- If approved, IMS, Inc. (honest broker for this project) sends file specifications and editing software to researcher and registries are notified of impending linkage.
- Researcher submits cleaned cohort file to IMS, Inc.
- Once validated, IMS, Inc. distributes cohort file to participating registries along with standardized linkage software
- Registries complete the linkage behind their firewall
- Report of aggregate high quality and manual review match counts by diagnosis year sent to IMS, Inc. for compilation.
- Summary of match counts across participating registries sent to researcher.
- Researcher reviews match counts to determine which registries to approach for additional information for matched records.
- Researcher contacts registries to initiate the application for individual-level data on matched cases, which may be facilitated by the use of a Central IRB or a Templated IRB form that are currently in development.