Winter 2018 NAACCR Narrative Leave a comment


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

 

 

Happy New Year everyone! 2018 is gearing up to be an exciting year for the Virtual Pooled Registry Cancer Linkage System (VPR-CLS). It will be a year of collaboration, implementation, discovery, and fine-tuning as we progress with the following activities:

  • Creation of annual VPR-CLS linkage file (see NAACCR Call for Data Instructions), which many registries have already completed, thank you
  • Development of a NCI Central IRB for minimal risk linkage studies
  • Adoption of Templated IRB/Registry Application when use of the Central IRB is not possible
  • Pursuit of funding for VPR participation
  • Use of the new, flexible, fast, and user-friendly linkage software, Match*Pro
  • Soft launch of the VPR-CLS
  • Additional testing of encrypted inter-registry deduplication
  • Informative webinars on many of the above topics!

I’d like to thank the registries that have worked with NCI on the U.S. Radiologic Technologist (USRT) Cohort Study. Information gathered during this VPR pilot test is informing ongoing development of the VPR-CLS. Currently, 26 registries have approved the study and 18 have released their data, accounting for 55% of the high quality matches that were identified during the initial linkage. NCI will compare the data received from the registries with information previously collected by self-report and medical record validation, giving us real-life feedback on the value of multi-registry linkages facilitated by the VPR-CLS.

I look forward to working with the registry community in the coming year and, as always, welcome your thoughts!

 

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