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Hereditary Cancer Info > Cancer Registries

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Cancer Registries

A cancer registry is a list designed to collect information about the occurrence of cancer such as:

  • the types of cancers that occur
  • the extent of cancer at the time of diagnosis (disease stage), and
  • the kinds of treatment that patients receive
  • patient outcomes of disease

The information generally is stored without any personal identification, protecting the confidentiality of participants. This data is used to enable researchers, public health professionals, and policy-makers to better understand and address the needs for cancer patients.

Registry data are critical for targeting programs focused on cancer risk including genetic, behavioral, and environmental risk factors. Such information is also essential for establishing and monitoring effective cancer screening and treatment. In addition, reliable registry data about patients is critical to research efforts, including research programs aimed at evaluating the effectiveness of cancer prevention, control, or treatment programs.

For hereditary cancers registries also play a very important role in determining

  • causes of cancer among high-risk individuals
  • who may or may not develop cancer
  • better screening and preventive options for high-risk people.

Registries are a way for researchers to contact those in the high-risk community with updates about research or information about new studies and programs concerned specifically with hereditary cancer. Because populations of individuals with known hereditary mutations are rare, a registry can be a way to link those people with the research and resources they need to manage their risk.

The Inherited Cancer Registry (ICARE)
A national registry for families affected by hereditary cancers. The website includes information and links to resources for people concerned about hereditary cancer.

Gilda Radner Familial Ovarian Cancer Registry
A registry for families affected by hereditary ovarian cancer.

Registry of Mastectomy for Breast Cancer Risk Reduction
This registry is open to high-risk women undergoing prophylactic mastectomy at Georgetown University Hospital.

FORCE:Facing Our Risk of Cancer Empowered