Spring 2018 NAACCR Narrative Leave a comment

Castine Clerkin, MS, CTR
NAACCR Program Manager of Virtual Pooled Registry



Spring has been slow to arrive at my teleworking site in New Hampshire and I truly believe that the grass is currently greener in other parts of the country!  Needless to say, despite winter’s grip, we have been busy as bees developing various aspects of the Virtual Pooled Registry. Below are some highlights.

NCI Central IRB and Templated IRB/Registry Application: NCI’s initial solicitation to identify a Central IRB for minimal risk studies did not yield a qualified candidate and will be re-solicited in the coming months.  Meanwhile, we have reviewed and incorporated registry feedback on the Templated IRB/Registry Application.  Your survey responses from last fall provided a great snapshot of what each state registry and their IRB will accept in regard to streamlining the application process for release of registry data on matched cases.  Currently, 31 registries can rely on the NCI Central IRB and/or use the Templated IRB/Registry Application for all aspects of their review process.  Only six registries have said that they must continue to use their state IRB forms; however, three that have both an IRB and registry review process are willing to use the Templated IRB/Registry Application in lieu of their registry form. Five of the registries are still unsure about what was possible and 11 registries did not respond to the survey. These results are very exciting!

Match*Pro Linkage Software:  IMS, Inc. has developed a great new linkage software, Match*Pro, with alpha- and beta-testing input from various cancer registries. The resulting software can easily handle large files, runs quickly, and offers some amazing functionality.  Match*Pro will be used for all VPR linkages and will be made available to cancer registries for use with other types of linkages as well.  A Match*Pro Workshop is being offered during the 2018 NAACCR Conference on Sunday, June 10th from 1-5 p.m.  Appropriate staff from all U.S. registries are encouraged to register here to attend this workshop: https://www.naaccr.org/conference-workshops/#Match

Development and Testing of VPR Cancer Linkage System (VPR-CLS): The VPR-CLS is the secure portal through which all VPR requests will be managed. The VPR-CLS will support the workflow and tracking associated with two phases of VPR linkages: 1.) Initial linkage and release of match counts; and 2.) Registry/IRB application for release of data on matched cases. The infrastructure for Phase I is essentially complete, while development of Phase 2 functionality will occur over the next 6-8 months.  We will be identifying a new study cohort and multiple cancer registries to participate in hands-on testing of Phase I VPR-CLS functionality in the coming months.  This testing will include using Match*Pro for the linkage, interfacing with the VPR-CLS, and providing feedback on areas for system improvement.

Thanks for your ongoing support as we work toward a single, comprehensive, user-friendly, efficient system that facilitates multi-registry linkages.





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