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.

Background

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.

Analysis of Cancer Registry Data

Analyzing cancer registry data can help states estimate the incidence and burden of cancers, including those that may increase risk of carrying a pathogenic mutation.

Geographic Analysis of Cancer Registry Data

State health departments can use cancer registry data to map out cancer cases associated with hereditary cancer syndromes such as breast, ovarian, prostate, and pancreatic cancers.

Using the Cancer Registry to Conduct a Survey

Survey data may help programs identify barriers and disparities in access to and use of cancer genetic services, and inform the design and implementation of patient, provider, and systems resources and interventions.

Using Registry Data for Provider Education and Systems Change

State health departments have used the results of their analyses on hereditary cancer burden to include state- and county-level data in provider education trainings and resources.

Linking Cancer Registry Data with Other Data Sources

Cancer registry data can be linked with other data sources to better understand hereditary cancer burden, use of genetic counseling and testing, and other findings, and can be used in program planning.

Adding or Expanding Data Fields Collected by the Cancer Registry

State health departments can work with the cancer registry to add or expand data fields they collect. New fields can provide valuable surveillance data that can be used in program planning.