Summer 2021 NAACCR Narrative Leave a comment


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

 

 

Summer is finally here! I write this article on the eve of departing for a 10-day road trip with our two boys (age 7 and nearly 5)… wish us luck! Below are some recent updates on progress related to the VPR.

Templated Data Use Agreement

The Templated Data Use Agreement (a.k.a. VPR Templated DUA) is a standard DUA designed to be used for minimal risk linkage studies facilitated by the VPR-CLS. It can also be adopted for other types of studies if so desired. Across the 43 VPR-participating registries, adoption of the VPR Templated DUA is as follows:

  • 21 registries have adopted the DUA “as is”
  • 5 registries have said “yes, with proposed edits”
  • 4 registries have no DUA requirement and therefore are N/A
  • 6 registries are still reviewing the DUA
  • 7 registries are unable to use the DUA

This is exciting news, as it significantly reduces the number of different, individual DUAs that must be reviewed and negotiated! For registries that have been able to adopt the VPR Templated DUA, researchers will fill out the document once and then send to all registries that have been able to adopt it. The VPR Templated DUA has officially been incorporated into the VPR.

Establishment of an NCI Central IRB (CIRB)

I am pleased to share that NCI recently entered into a 3-year contract with a CIRB. Accredited by the Association for the Accreditation of Human Research Protections Program (AAHRPP), the Biomedical Research Alliance of New York (BRANY) will serve as the CIRB for minimal risk linkage studies facilitated by the VPR. While there is much to be done before incorporating the CIRB into the VPR workflow, we are excited about the future efficiencies that this initiative offers.

Wishing you all a fun and relaxing summer!

Castine Clerkin,
NAACCR VPR Program Manager

 

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