Collaborating with Central Cancer Registries for Public Health Genomics
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Central cancer registries make up a comprehensive national network of population-based cancer surveillance to monitor cancer cases at local, state, and national levels. These registries provide complete, timely, and quality cancer data that can be used to plan, implement, and evaluate cancer prevention and control programs. Cancer registries can be used to identify populations that would benefit from enhanced cancer screening and outreach efforts. This guide provides examples of how state health departments have collaborated with cancer registries to inform and implement activities in cancer genomics to meet the special needs of people at risk of hereditary cancers.
CDC’s Cancer Genomics Program has funded several state health departments to implement education, surveillance, and policy and systems change activities addressing Hereditary Breast and Ovarian Cancer syndrome (HBOC) and Lynch syndrome (LS). Cancer registries have been critical partners for implementing activities in cancer genomics. The Cancer Registries Amendment Act requires health care facilities and practitioners to report newly diagnosed cancer cases to cancer registries supported by CDC’s National Program of Cancer Registries (NPCR) and/or the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program. While some data are required by these programs, individual registries can collect additional data to meet priorities and interests unique to their state.
In this guide, we describe approaches for collaboration with cancer registries and provide examples of how funded recipients have implemented them and lessons learned. Each approach highlights potential resources required, challenges, and outputs or outcomes from implementing that specific activity.