Spring 2020 NAACCR Narrative Leave a comment

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



Boy, the world has gone a little topsy-turvy since the last NAACCR Narrative! I hope that you are all adjusting and staying well. Despite the upheaval, progress on the VPR Cancer Linkage System (VPR-CLS) testing and associated resources continues. Here are some recent highlights:

For those of you who have been following the VPR-CLS development and testing, below is the latest news about our pilot testing activities.


NEW! National Death Index Fact Sheet

Over the past year or so, it has come to our attention that there are different interpretations about how information from the National Death Index (NDI) linkage, including cause of death, can be shared with external parties. A fact sheet summarizing the allowable release was created based on review of the NPCR-NDI application used by all NPCR and SEER registries. The NDI Fact Sheet can be found here: https://www.naaccr.org/registry-operations-guidelines/


Phase I Pilot Testing

Our final Phase I pilot test study, The Effects of Education on Cancer in High School and Beyond, was released for linkage in the midst of registry staff transitioning to work from home and being recruited to support COVID-19 activities in their health departments. Even so, 75% of the pilot test registries completed the Phase I linkage and uploaded match count reports within the intended 2 ½ week timeframe, and a number of registries submitted shortly after the May 1st due date. Thank you! This is a testament to both the commitment of the registries and the ease of the process.


Phase II Pilot Testing

Phase II supports the streamlined process of applying for release of individual-level cancer data on matched cases identified in the Phase I linkages. Two studies from the Phase I testing are now involved in Phase II testing. The web-based Templated IRB/Registry Application (TIRA) has been adopted by 84% of the 38 participating pilot test registries, significantly reducing the number of individual applications completed by the researcher. For reviewing bodies unable to use the TIRA, the VPR-CLS provides a list and URL for any state-specific applications. Once submitted, VPR Liaisons in each registry are populating the VPR-CLS tracking system with information on the estimated IRB/registry review dates and approval status to help researchers monitor the request across registries. To date, the Childhood Cancer Survivor Study has been approved by 11 registries, the Transplant Cancer Match Study has been approved by 14 registries, and the researchers are excited to be receiving cancer data!


Templated Data Use Agreement

The NAACCR Templated DUA Task Force has spent the past year spearheading development of a Templated DUA. 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 Project Data Transfer and Use Agreement: http://thefdp.org/default/committees/research-compliance/data-stewardship/, which has been adopted by many universities. Once completed, the Templated DUA will be shared with registries and their legal teams for feedback and input on the ability to adopt a standard form. Vetting of the Templated DUA is anticipated this summer.


Webinar of VPR Concurrent Session

In the absence of the 2020 NAACCR Annual Conference, the planned VPR Concurrent Session will be presented as a NAACCR Talk on Wednesday, September 2, from 2-3:30. Please save the date! Presentation content includes the following VPR-related topics:

  • Where are we now? Virtual Pooled Registry Cancer Linkage System pilot testing progress
  • Making the VPR Work: How registries adapted their review/approval process to support VPR minimal risk linkage studies and use of the Templated IRB/Registry Application
  • P3RLS – Privacy Preserving Patient Record Linkage Software Evaluation
  • Towards a new paradigm in data sharing: A pilot study of remote access to cancer registry data


Wishing you all the best as we navigate through these unchartered waters together!

Castine Clerkin, NAACCR VPR Program Manager



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