Cancer Registries

What is a Cancer Registry?

A cancer registry is a center that collects, organizes and analyzes information on cancer cases that have been diagnosed or treated in one institution or a geographic area. Data provides information that drives research, education, administrative decisions, and the advancement of clinical care.

How is the Registry Generated?

Our national cancer registry begins at individual health institutions – hospitals, therapeutic radiation facilities, freestanding surgical centers, and pathology laboratories. In addition to the data they normally collect on patients diagnosed and treated for cancer at their facilities, they may also survey physicians and patients. The registry is responsible for lifetime follow-up of all patients entered into the database, so that means information is constantly updated. The data is reported to state and national organizations to be merged into combined databases. We report our data to the New York State Department of Health.

Cancer registries have also been established by special-interest groups to collect and maintain data on a particular type of cancer. For example, the Gilda Radner Familial Ovarian Cancer Registry collects cancer information from those families with two or more relatives having ovarian cancer. Other special cancer registries collect data on other types of cancer.

What Information is Maintained in the Cancer Registry?

Cancer registries collect data such as:

  • Demographic information (age, gender, race/ethnicity, birthplace, and residence)
  • Medical history (behavioral information, occupation, history of previous disease)
  • Diagnostic findings (physical findings, dates and results of diagnostic procedures)
  • Disease characteristics (location in the body, cell type, extent of the disease at the time of diagnosis (stage))
  • The kinds of treatment a patient receives and their results
  • Annual status updates

How is the Information Kept Confidential?

All information collected on cancer patients is kept strictly confidential. It is stored under secure conditions and the individual cancer patient is never identified outside the registry system. Only grouped data without patient identifiers are analyzed and published. The cancer registry at Strong Health is in compliance with HIPAA regulations.

Why Generate and Keep Cancer Registries?

Registry data is used to find ways to prevent cancer through research and education, allocate resources where they will do the most good, and improve diagnosis, treatment, follow-up care and quality of life for patients.

Cancer registries help physicians by providing:

  • Information that may help them detect cancer earlier
  • Survival rates by cancer type and stage
  • Information on treatment methods and outcomes

They help health care institutions to:

  • Compare their data to nationwide results and identify best practices
  • Assess utilization of their existing facilities and plan for new ones
  • Allocate resources – both people and dollars
  • Manage lifetime follow-up of patients

They are the foundation for cancer prevention and control programs,
providing investigators with the information they need to:

  • Examine trends in various population groups
  • Identify types of cancer that occur in their area at substantially different rates compared to state and U.S. rates
  • Trace the causes of cancer and uncover risk factors, such as environmental or behavioral risks
  • Set priorities for allocating public health funds
  • Develop programs to reduce risk factors (such as radiation or chemical exposures, tobacco use, sun exposure)
  • Implement early detection programs
  • Identify the best patterns in cancer management
  • Determine whether prevention, screening and treatment efforts are making a difference