Summer 2022 NAACCR Narrative Leave a comment

Castine Clerkin, MS, CTR

NAACCR Program Manager of Virtual Pooled Registry



Hello and Happy Summer! I write this on the cusp of a week-long beach vacation and hope that your summers have also been filled with well-deserved down time, fun adventures, and relaxation. Not only have the temperatures in New Hampshire been hot, but so has the activity in the recently launched VPR.

Status of VPR-Facilitated Linkages

The VPR was launched in July with 12 pre-selected, federally funded studies. One study has declined participation due to internal budget cuts. The status of the remaining eleven Phase I studies is as follows:

Eight studies have submitted their Phase I linkage requests, which have undergone an initial NAACCR review and final review/approval by the VPR Research Review Committee (RRC), which consists of representatives from NCI, CDC, NAACCR, ACS, and three registries. The status is as follows:

  • Approved by the RRC and linkage with registries has been completed.
    • Study on the Incidence of Cancer Diagnosis and Mortality among Military Aviators and Aviation Support Personnel: Cohort of 10.9M resulting in 539,983 high quality matches from 44 registries.
    • Community-based cohort study of disease incidence in Ohio and West Virginia: Cohort of 35K resulting in 6,311 high quality matches from 42 registries.
    • NYU Women’s Health Study: Cohort of 14K resulting in 6,843 high quality matches from 42 registries.
  • Approved by the RRC and awaiting upload of the cohort file.
    • The Watch the Spot Trial: A Pragmatic Trial of More Versus Less Intensive Strategies for Active Surveillance of Patients with Small Pulmonary Nodules.
  • Approved by the RRC and awaiting a signed DUA with IMS.
    • An Updated Cohort Study of Workers Exposed to Ethylene Oxide.
  • Under review by the RRC.
    • Enabling a Paradigm Shift: A Preference-Tolerant RCT of Personalized vs. Annual Screening for Breast Cancer (WISDOM Study).
    • Gulf Long-Term Follow-Up Study.
    • Black Women’s Health Study.

Three studies have yet to submit their Phase I linkage request:

  • Cancer Incidence and Cancer Mortality in the World Trade Center Health Registry: Working with IMS to complete their internal security review process.
  • Lung Cancer Risk Associated with HIV and Substance Use (Including Cannabis) in a Long-Term Multi-ethnic Cohort.
  • Breast Cancer Family Registry.

New Data Items to Identify Non-Releasable Cases

This year NAACCR developed two new data items that will be implemented in 2023 to standardize the coding of potentially non-releasable cases:

  • No Patient Contact Flag [Item 1854]. Used to flag when a patient, family member, or provider notifies the central registry that the patient is not to be contacted for research purposes. This data item is assigned at the person-level.
  • Reporting Facility Restriction Flag [Item 1856]. Used to flag tumor records that the central cancer registry may not be allowed to release for research and certain other types of uses due to the type of reporting facility (e.g., VA or DoD). This data item is assigned at the tumor-level based on the reporting facilities contributing to the consolidated record.

The goal is for these items to make it easier for central registries identify and exclude non-releasable cases when processing data requests, including VPR linkage studies.

Enjoy the rest of your summer!

Castine Clerkin
NAACCR VPR Program Manager




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