Updates on the Virtual Pooled Registry for 2023


Here are some of the noteworthy highlights from VPR.

I’m so excited to share the below updates on the Virtual Pooled Registry (VPR). February marks the first anniversary of the VPR’s official launch. We have accomplished so much in the past year and couldn’t have done it without the support of NCI, IMS, VPR workgroups and consultants, eager researchers, and, most importantly, the central cancer registries that have supported VPR linkages.

I’d like to take a moment to share some noteworthy highlights from the past year:

  • 45 registries, representing 95% of the U.S. population, participated in the VPR.
  • Eight studies were reviewed and approved for Phase I linkage.
  • Six studies, ranging in size from 14K to 10.9M, completed their Phase I linkages for a total of ~11.1M cohort members linked and ~564K high-quality cancer matches identified.
  • 38 registries currently use the Templated IRB/Registry Application (TIRA) for all or part of their review process, thereby reducing the number of individual applications from 58 down to the TIRA plus nine different applications.
  • 24 registries have adopted the VPR Templated DUA in lieu of their existing registry DUA, thereby simplifying DUA completion and compliance.
  • 12 registry IRBs ceded review to the NCI-funded Central IRB operated by the Biomedical Research Alliance of New York (BRANY), with more registries to follow.
  • BRANY reviewed and approved six VPR studies, with each review taking two to three days to perform.

VPR Linkages for 2023

Eight new studies have been selected to use the VPR for registry linkage in 2023. In addition, the VPR will facilitate up to five outstanding study linkages from 2022 and relinkages for the Transplant Cancer Match Study and the Childhood Cancer Survivor Study.

New Central IRB (CIRB) Website

As the CIRB for review of VPR studies, BRANY has a new website that provides an overview of the CIRB review process and activities to date, as well as guidance for local IRBs wishing to learn more about ceding review to BRANY.

VPR Templated DUA

The VPR Templated DUA has been posted on NAACCR’s VPR webpage.

Secondary Data Sharing Initiatives

The NAACCR Secondary Data Sharing Task Force has been meeting monthly since April 2022 and recently finalized a Secondary Data Sharing Fact Sheet, which will be distributed through the NAACCR ListServ and posted to the NAACCR VPR webpage.

Tags: Winter 2023

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