What You Need to Know About Cancer Registries: Frequently Asked Questions for Patients and Their Families

What is a cancer registry?

A cancer registry is an information system established to collect, store, and use information about patients with a cancer diagnosis to help improve cancer treatment and prevention. This information is stored in secure electronic databases and used by the state and healthcare professionals for public health purposes.

How is my information given to the registry? Does the state need my consent to put my information in the registry?

Your doctor and hospital are required by law to report information about your cancer, treatment, and limited background information (like your age and race) to the cancer registry.  The state does not require your consent for this process because cancer is legally defined as a “reportable” condition, which means that collecting this information serves a significant and useful purpose for patients, the community, and overall public health.

What kinds of information do the registries collect?

Specific information that is collected varies across states, but most of the information will be related to your cancer diagnosis and treatment, as well as some background information. Basic examples include:

  • Cancer type and stage
  • Treatments (such as what type of surgery, chemotherapy, and radiation you had, if any)
  • Age, race, and sex
  • Height and weight
  • Address

What are cancer registries used for?

Cancer registries are used to collect and analyze data on cancers in the region or state. State and healthcare professionals look for patterns and trends that address questions such as: Are more people getting cancer than in the past? Are certain locations having more or less cases of cancer? Do certain cancers occur more in one group of people than others? Are cancer treatments improving? Are certain treatments not working? The results are used to help improve the health of the community and patients overall.

What about privacy? Who can see my data?

Your information is kept secure. Only people who prove to the state that they will keep your information confidential and use it only for important public health work will be given access to your data. Who can access this information and steps required to access it vary by state. If you have questions or want more information please contact your state’s cancer registry.
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Where can I find more information?

You can find additional information on how cancer registries work at:
How Cancer Registries Work, Centers for Disease Control and Prevention
Cancer Registries, National Cancer Institute