Fall 2020 NAACCR Narrative Leave a comment

Castine Clerkin, MS, CTR
NAACCR Program Manager of Virtual Pooled Registry



It’s fall here in New England, time for apple picking, harvesting the last squash in the garden, and raking big piles of colorful leaves for the kids to jump in! I always love the change of seasons, especially from summer to fall, as there is always a sense of wrapping things up and slowing down. Like me, I’m sure you have all been experiencing a more frenetic pace over the last 6 months, so I hope the change of seasons is good to you. We continue to make great strides with the VPR-CLS development and have the below updates to report:

Revised Common Rule Materials on NAACCR Website

On August 14th and 28th, we collaborated with the Office of Human Research Protections (OHRP) to deliver a webinar on the Revised Common Rule and associated implications for registries, IRBs, and the VPR-CLS. The OHRP presentation clearly laid out when the revised Common Rule applies, which activities require IRB approval, when the registry is engaged in research, and how to interpret various study scenarios involving release of registry data. The revised Common Rule challenges some of our normal ways of thinking and will impact the requirement for IRB review, for example, “Simply releasing identifiable materials to investigators is not considered human subjects research activity.” If you’d like to learn more, you can do the following:

  • Listen to the recordings available on the NAACCR Education and Training system.
  • Check out the new section of the NAACCR website focused on the revised Common Rule: naaccr.org/irb-information-for-cina/

On-boarding of new VPR participating registries

We are excited that a number of additional registries have signed on to join the VPR-CLS and participate in upcoming linkage studies. These registries are currently going through the onboarding process to get set up in the VPR-CLS and learn how to use the system. All participating VPR registries will have the opportunity to receive funding for linkage with the newly initiated National Childhood Cancer Registry. If there are additional registries who wish to join the VPR-CLS, please reach out to me (cclerkin@naaccr.org)!

Templated Data Use Agreement

The NAACCR Templated Data Use Agreement (DUA) has been finalized and sent to all U.S. registries for review and feedback. Designed to minimize the volume and complexity of DUAs across registries involved in VPR linkage studies, the Templated DUA incorporates key elements from registry DUAs and builds on the foundation provided by the well-vetted Federal Demonstration Partnership Data Transfer and Use Agreement: http://thefdp.org/default/committees/research-compliance/data-stewardship/.

Once finalized, the Templated DUA will be adopted for VPR-CLS linkage studies and shared with the cancer surveillance community for use with other types of studies.


All the best!

Castine Clerkin, NAACCR VPR Program Manager



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