The purpose of this webinar is to discuss how registries can better understand and support the NCI data sharing requirements for researchers, which for some registries currently pose significant barriers. A significant and related topic, demonstration of data sharing methodologies, will be presented in the future.

NAACCR has for many years provided SAS tools to the cancer surveillance community for reading and writing NAACCR-standard flat files. With the switch in V21 to only XML format, the toolset needed an upgrade. This webinar will demonstrate how to read and write NAACCR V21 XML files using SAS. It is highly recommended for registry staff and others in the cancer surveillance community who want to interface with NAACCR V21 XML files using SAS.

This NAACCR Talk is based on a concurrent session that had been planned for the in person 2020 NAACCR Annual Conference.

This NAACCR Talk is based on a concurrent session that had been planned for the in person 2020 NAACCR Annual Conference.

This NAACCR Talk is based on a concurrent session that had been planned for the in person 2020 NAACCR Annual Conference.

This NAACCR Talk is based on a concurrent session that had been planned for the in person 2020 NAACCR Annual Conference.

This NAACCR Talk is based on a concurrent session that had been planned for the in person 2020 NAACCR Annual Conference.

Research has demonstrated that firefighters are routinely exposed to many known and suspected human carcinogens including brominated flame retardants, PAHs, VOCs, benzene, asbestos and PFAS. While there is strong evidence that firefighters have higher risk for certain types of cancer compared to the general population, many details about cancer risk and risk factors remain poorly understood and subgroups of firefighters; including women, minorities, and volunteers, are understudied. Evidence for excess risk of cancer comes largely from historical cohort studies with limited exposure information and often lack data on important potential confounding factors, such as smoking and alcohol use. And because the cohorts are identified mainly through employment related records, these studies may be susceptible to downward bias from healthy worker effects. These studies also e exclude the majority of firefighters, who are volunteer not career firefighters. The aims of this session are to understand best practices for use of cancer registry data to this field of study, describe data access challenges and approaches, address approaches to improve exposure assessment and minimize impact of healthy worker effects, as well as become familiar with the development of the new National Firefighter Registry that aims to address the above gaps in information on understudied subgroups, such as woman and minorities, as well as volunteer and wildfire firefighters.

The revised Common Rule (effective January 21, 2019) is designed to strengthen protections for study participants and lighten administrative workloads for researchers and IRBs alike. These changes impact how research studies involving linkage with cancer registries, like those managed through NAACCR’s Virtual Pooled Registry, will be reviewed and processed across the country. NAACCR has partnered with the HHS Office for Human Research Protections (OHRP) to share information on the revised Common Rule, such as when research involving registries requires IRB review and the impact of the changes on research covered by the revised regulations. Intended Audience: State/University IRBs and staff from central cancer registries involved in linking with research studies and releasing coded cancer data for matched cases.

AI/AN people experience a different burden of cancer than their non-Native counterparts. This webinar will discuss current issues in AI/AN cancer surveillance, and present research that aims to describe and understand cancer among Indigenous peoples in the US and Canada.