VPR Fact Sheets and Resources

VPR Fact Sheets and Resources

VPR Fact Sheets and Resources

Various Fact Sheets and Resources have been developed to provide pertinent information for registries, IRBs, and researchers interested in the VPR-CLS activities

Provides a description of the VPR-CLS, along with benefits for registries to participate in VPR-CLS linkages. Registry Fact Sheet

Developed to assist researchers in writing grants/protocols that propose use of the VPR-CLS for cancer registry linkages. Researcher Fact Sheet

Single IRB Fact Sheet: Describes changes to the Common Rule that impact central cancer registry linkage studies and use of a Central IRB.

Minimal Risk Research Fact Sheet: Describes changes to the Common Rule that impact IRB review of minimal risk linkage studies using central cancer registry data.

Common Rule Guidance, Examples, and Q&A: Describes changes to the Common Rule and how the impact on IRB review for downstream research using cancer registry data.

VPR Templated DUA (VPR DUA): The VPR DUA is a common agreement designed to be used in lieu of the individual registry DUAs, thereby minimizing the number of separate DUAs and ensuring consistency in the terms and conditions. Currently twenty-six of the VPR registries have adopted the VPR Templated DUA.
VPR DUA Companion Document: This is a helpful guidance document for using the VPR Templated DUA.

Secondary Data Sharing Fact Sheet: Describes challenges associated with secondary sharing of registry data, summarizes NIH requirements for secondary sharing, provides rationale for allowing secondary sharing, and identifies how registries can help minimize barriers to further sharing.

DbGaP Model for Secondary Data Sharing: PowerPoint presentation that outlines the requirements associated with sharing data through DbGaP, a federal controlled access repository. These slides were presented to the Secondary Data Sharing Task Force by Charlisse Gaga-Anan, JD, MA, Program Director, Epidemiology and Genomics Research Program (EGRP), Division of Cancer Control and Population Sciences (DCCPS), National Cancer Institute (NCI) October 14, 2022.

Copyright © 2018 NAACCR, Inc. All Rights Reserved | naaccr-swoosh-only See NAACCR Partners and Sponsors