Winter 2020 NAACCR Narrative Leave a comment


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

 

 

Happy 2020 everyone! Last year was a whirlwind of pilot testing activity and conversations with requestors interested in using the Virtual Pooled Cancer Registry Linkage System (VPR-CLS) to link their studies with U.S. cancer registries. I had the opportunity to present at the NCI Cohort Consortium Meeting and the World Trade Center Data Linkage Symposium. Both meetings were a good reminder about the value of the VPR-CLS and the importance of streamlining not only the linkage and application process, but also the release and allowable use of registry data. To this end, we continue to develop a Templated Data Use Agreement and are planning a webinar to begin the conversation about secondary data sharing and methods to address data confidentiality, security, and use.

On a related note, I am recruiting individuals to join the NAACCR Data Sharing Workgroup. Through this group we seek to better understand the registry context and concerns regarding data sharing, explore the intent/extent of the NIH Data Sharing Policy, and develop a plan that will support this policy while protecting the registry data. Individuals interested in participating can contact Castine Clerkin (cclerkin@naaccr.org).

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

Phase I Pilot Testing

Phase I pilot testing has proceeded very smoothly. The 38 pilot test registries (representing nearly 75% of the U.S. population!!) securely downloaded validated cohort files, performed linkages using standard Match*Pro configuration files, and quickly uploaded match count reports to help researchers determine where to pursue release of individual level data. While one pilot test remains, the completed Phase I pilot tests identified 268,680 high quality cancer matches across the following studies:

  • Childhood Cancer Survivor Study (38K)
  • Cohort Cancer Registry Follow-up Study (290K)
  • Transplant Cancer Match Study (1.2M)
  • Women’s Health Initiative (161K)
  • Sister Study (55K)

Phase II Pilot Testing

We are excited to report that VPR-CLS Phase II pilot testing has been initiated with the Childhood Cancer Survivor Study and the Transplant Cancer Match Study. Phase II supports a streamlined process of applying for release of individual-level cancer data on matched cases identified in the Phase I linkages. The web-based Templated IRB/Registry Application (TIRA) has been submitted to the 84% of participating pilot test registries that agreed to use this form for their review process. VPR Liaisons in each registry have been entering information on the IRB/registry estimated review dates and approval status into the VPR-CLS tracking system to help researchers monitor the status of the request across registries. We look forward to receiving registry feedback on the Phase II process and sharing results of the pilot testing with the greater registry community.

Each time a New Year rolls around and I reflect on the previous year, I’m always filled with gratitude to be working in the field of cancer surveillance, surrounded by passionate and dedicated individuals. Thank you for your ongoing support of the VPR-CLS, we couldn’t do it without you!

All the best for 2020~

Castine Clerkin, NAACCR VPR Program Manager

 

 

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