Cancer Registry Profession

What is a cancer registry?

A cancer registry is an information system designed for the collection, management, and analysis of data on persons with the diagnosis of a malignant or neoplastic disease (cancer). Cancer registries are classified into three types:

  • Hospital registries maintain data on all patients diagnosed and/or treated for cancer at their facility. Healthcare facilities report cancer cases to the central or state cancer registry as required by law.
  • Central registries are population-based registries that maintain data on all cancer patients within certain geographical areas.
  • Special purpose registries maintain data on a particular type of cancer, such as brain tumors.

Why maintain a cancer registry?

Maintaining a cancer registry ensures that health officials have accurate and timely information, while ensuring the availability of data for treatment, research, and educational purposes:

  • Local, state, and national cancer agencies use registry data to make important public health decisions that maximize the effectiveness of limited public health funds, such as the placement of screening programs.
  • Cancer registries are valuable research tools for those interested in the etiology, diagnosis, and treatment of cancer.
  • Fundamental research on the epidemiology of cancer is initiated using the accumulated data.
  • Lifetime follow-up is an important aspect of the cancer registry. Current patient follow-up serves as a reminder to physicians and patients to schedule regular clinical examinations and provides accurate survival information.
What information is maintained in the cancer registry?
  • Cancer registries maintain a wide range of demographic and medical information:
  • Demographic information: age, gender, race/ethnicity, birthplace, and residence.
  • Medical history: physical findings, screening information, occupation, and any history of a previous cancer.
  • Diagnostic findings: tests, dates, and results of procedures used to diagnose cancer.
  • Cancer information: primary site, cell type, and extent of disease.
  • Cancer treatment: surgery, radiation therapy, chemotherapy, hormone, or immunotherapy.
  • Follow-up: annual information about treatment, recurrence, and patient status.
 
A Case Study: The Role of the Cancer Registrar in the Flow of Cancer Information has been prepared to help you better understand how the data is collected.


How is cancer registry data used?

Healthcare providers, public health officials, and researchers use the data to: 
  • Calculate cancer incidence
  • Evaluate efficacy of treatment modalities
  • Determine survival rates
  • Develop targeted educational and screening programs
  • Conduct research on the etiology, diagnosis, and treatment of cancer

How do cancer registries ensure confidentiality?

Confidentiality of patient identifying information and related medical data is strictly maintained at each cancer registry. Aggregate data are analyzed and published without any patient identifiers.

Cancer Registry Timeline

1926: First hospital registry at Yale-New Haven Hospital in New Haven, CT.
1935: First central cancer registry established in Connecticut.
1956: American College of Surgeons requires a cancer registry for approved cancer programs.
1971: National Cancer Act budgets monies to the National Cancer Institute for research, detection and treatment of cancer.
1973: Surveillance, Epidemiology and End Results (SEER) Program of NCI establishes the first national Cancer Registry.
1983: NCRA’s Council of Certification establishes the Certified Tumor Registrar (CTR®) credential.
1992: Congress establishes a National Program of Cancer Registries (Public Law 102-515).
1993: State laws make cancer a reportable disease.