Fall 2018 NAACCR Narrative Leave a comment


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

 

 

Fall is my favorite time of year here in New Hampshire! It’s not only beautiful, but it’s also a time to prioritize activities to tackle before the snow flies at the end of the year. Even my boys are helping!

In terms of the Virtual Pooled Registry Cancer Linkage System (VPR-CLS), we are wrapping up our first pilot test of the Phase I functionality to support the initial registry linkage and release of aggregate match counts. We were fortunate to have 35 registries volunteer to participate in the linkage with the Childhood Cancer Survivor Study cohort. During the allotted two-week timeframe, 30 registries completed the linkage using Match*Pro and a pre-defined configuration file. The resulting match count reports were uploaded to the VPR-CLS and shared with the study investigators. 21 of these registries also manually reviewed the match results to help us assess software performance. While we received minor suggestions for software tweaks, by far the best feedback received was this:

“Of all linkages I have completed in the past 3 years,
the VPR-CLS set-up has been by far the easiest and smoothest linkage I have done.”

We are now focusing our attention on Phase II of the VPR-CLS functionality, which will streamline the submission and tracking of registry/IRB requests for release of individual-level data on matched cases. Registries previously responded to a survey about whether they could use the Templated IRB/Registry Application (in lieu of their state-specific forms) and/or the NCI Central IRB for review of minimal risk linkage studies (in lieu of their local/state/university IRB). Currently, 73% of respondents are able to use one of these options to simplify the application and review process. This will significantly reduce the time and resources that registries, IRBs, and researchers dedicate to completing and reviewing such requests. We aim to have the Phase II functionality completed by year’s end and then embark on the system testing.

As we prepare to launch the VPR-CLS in 2019, we thought it would be helpful to provide U.S. registries with a comprehensive VPR-CLS Fact Sheet. This fact sheet, which will be shared soon, provides information on the main features of the VPR-CLS, how it works, and the benefits of registry participation. To date, the level of support for, and participation in, the pilot testing has been incredible and we look forward to increased participation once the VPR-CLS goes live.

As always, I’m happy to hear from registries with any comments, questions, or concerns!

 

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