Fall 2021 NAACCR Narrative Leave a comment

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



The colorful leaves have fallen to the ground, the garden has been cleared by our dear pig Nutmeg, and the boys have both wrapped up their soccer seasons. The intensity of Fall has come and gone in a flash and this season’s VPR update will be equally terse!


New VPR-Participating Registries

We are excited that Maryland, Wisconsin, and Washington, DC will be joining the VPR, bringing population coverage up to 90%! If there are other not-yet-participating registries interested in coming onboard, please reach out to me at cclerkin@naaccr.org.


NIH-AARP Diet and Health Study

This summer VPR registries linked with the NIH-AARP Diet and Health Study cohort (n=566,398) of individuals recruited from 1995 to 2020. The purpose of the study is to investigate the relationships among lifestyle, diet, mortality, chronic disease and cancer through continued passive follow up. In Phase I match count reports, uploaded to the VPR by 40 registries, over 189K high quality matches were identified among the study cohort! The study is looking forward to proceeding with Phase II and requesting release of individual-level data on the matched cases.


NCI Central IRB Efforts

As mentioned in the last newsletter, NCI has entered into a three-year contract with the Biomedical Research Alliance of New York (BRANY), which will serve as the Central IRB (CIRB) for linkage studies facilitated by the VPR. On Monday, October 25, BRANY provided an introductory webinar to registries and their IRBs. This webinar was recorded and is available on the NAACCR website. The next step is for BRANY to talk with each registry’s IRB about entering into a reliance agreement to cede review to the CIRB. The reliance agreement will ideally cover all studies pursuing linkage through the VPR, rather than being signed on a study-by-study basis. NAACCR will be providing support to the CIRB and we look forward to working with registries/IRBs to make progress on this important initiative.

Until next time!

Castine Clerkin,
NAACCR VPR Program Manager



Copyright © 2016 NAACCR, Inc. All Rights Reserved | See NAACCR Partners and Sponsors