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 IRB/Registry Application (TIRA): The TIRA is a common application designed to be used in lieu of the individual registry and IRB applications, thereby eliminating the need for researchers to fill out numerous applications. Currently 40 of the 45 VPR registries have adopted the TIRA.

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.

Summary of Secondary Data Sharing Resources: Includes a list of helpful websites, presentations, and articles regarding secondary data sharing requirements and benefits.