How it works

How it works

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. Methods to simplify the registry and IRB application process are also being developed, including a templated IRB/Registry Application, to be used in lieu of state-specific forms, and creation of a Central IRB dedicated to cancer registry linkage studies.

The VPR-CLS consists of, and is being developed in, two distinct phases.

 

  • Phase I supports a standardized multi-registry linkage and release of aggregate match counts (by state and diagnosis year) to the researcher. Phase I includes a web-based researcher application, secure data transfer protocols between researchers and IMS and registries, and use of a new record linkage software (Match*Pro) optimized for linkages between cancer registries and research cohorts. Phase I functionality is currently being tested.

 

  • Phase II supports the process of applying for release of individual-level cancer data on matched cases. It includes a web-based application, a dedicated Central IRB for the program, use of a Templated IRB/Registry Application, and a robust and comprehensive tracking system. Phase II development and testing is anticipated to be complete by the end of 2019.

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:

  1. Researcher submits application using web-based VPR-CLS form.
  2. Application is reviewed by NAACCR and Research Review Committee and researcher is notified of decision and/or any questions.
  3. If approved, IMS, Inc. (honest broker for this project) sends file specifications and editing software to researcher and registries are notified of impending linkage.
  4. Researcher submits cleaned cohort file to IMS, Inc.
  5. Once validated, IMS, Inc. distributes cohort file to participating registries along with standardized linkage software
  6. Registries complete the linkage behind their firewall
  7. Report of aggregate high quality and manual review match counts by diagnosis year sent to IMS, Inc. for compilation.
  8. Summary of match counts across participating registries sent to researcher.
  9. Researcher reviews match counts to determine which registries to approach for additional information for matched records.
  10. VPR-CLS facilitates the process of requesting individual-level data on matched cancer cases, including use of the Central IRB, electronic submission of a Templated IRB/Registry Application, and provision of an online system to track the status of requests.

 

 

Copyright © 2018 NAACCR, Inc. All Rights Reserved | naaccr-swoosh-only See NAACCR Partners and Sponsors