Spring 2021 NAACCR Narrative Leave a comment


Castine Clerkin, MS, CTR
NAACCR Program Manager of Virtual Pooled Registry
cclerkin@naaccr.org

 

 

Happy Spring Everyone! The snow has finally melted here in the Northeast and buds are appearing on the trees. The last few months have been a flurry of activity and yet my report for the Spring Narrative is short and sweet. Hope these updates find you well and looking forward to warmer weather!

Final VPR-CLS Pilot Testing of Phase II Functionality: The Cohort Cancer Registry Follow Up Study (combined Nurses’ Health Study and Health Professionals Follow-Up Study) recently completed their Templated IRB/Registry Application (TIRA). The TIRA was released to 21 of the 35 participating registries to initiate the Phase II review and approval process for release of individual-level data on matched cases. The researcher will now focus on completing any state-specific applications or additional required forms, such as DUAs or research agreements. Two additional studies (Sister Study and Women’s Health Initiative) will soon begin the Phase II application process. We look forward to receiving feedback from both researchers and registries on the recent enhancements to the Phase II functionality and workflow.

Templated Data Use Agreement: Last month, participating VPR registries received the final version of the Templated DUA (now called the VPR DUA), which covers release of registry data on matched cases resulting from linkage with study cohorts. VPR registries were asked to determine whether the VPR DUA can be used in lieu of their existing DUA or other agreements. Among the 16 registries that have responded to date, 11 are able to adopt the VPR DUA “as is” and 5 must continue to use their existing DUA. In the coming months, the VPR DUA will be incorporated into the VPR-CLS workflow and used with future linkage studies. The VPR DUA will also be shared with the greater cancer surveillance community for voluntary use with other types of studies.

Many thanks!

Castine Clerkin, NAACCR VPR Program Manager

 

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