Cancer registries can be classified into three general types:

• Health care institutions registries: These registries maintain data on all patients diagnosed and/or treated for cancer at their facility. Health care facilities report cancer cases to the central or state cancer registry as required by law. UVM Health Cancer Registries are examples of this type of registry.
• Central registries: These registries are population-based and maintain data on all cancer patients within certain geographical areas. The Vermont and New York State Cancer Registries are this type of registry.
• Special purpose registries: These registries maintain data on a particular type of cancer, such as brain tumors.

The National Cancer Act of 1971 mandated cancer care facilities to collect, analyze and disseminate data for use in the prevention and treatment of cancer. Then in October 1992, Congress enacted Public Law 102-515 establishing a National Program of Cancer Registries for the following purposes:

• Local, state, and national cancer agencies use registry data in defined areas to make important public health decisions.
• 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.

• Demographic information: Age, gender, race/ethnicity, birthplace and geographic location
• Medical history: Physical findings, screening information, occupation and any history of previous cancer
• Diagnostic findings: Types, dates and results of procedures used to diagnose cancer
• Cancer information: Primary site, cell type and extent of disease
• Cancer therapy: Surgery, radiation therapy, chemotherapy, hormone or immunotherapy
• Follow-up: Annual information concerning treatment, recurrence and patient status is updated to maintain accurate surveillance information

• Evaluate patient outcomes, quality of life and satisfaction issue and implement procedures for improvement
• Provide follow-up information for cancer surveillance
• Calculate survival rates by various data items
• Provide information for cancer program activities
• Analyze referral patterns
• Allocate resources at the health care facility, the community, region or state level
• Develop educational programs
• Report cancer incidence as required under state law
• Evaluate efficacy of treatment modalities

Confidentiality of patient identifying information and related medical data is strictly maintained in accordance with the Health Insurance Portability and Accountability Act (HIPAA). Aggregate data are analyzed and published without patient identifiers.

• Continue annual life-long follow-up with your health care provider so information can be obtained on:
  • Residual disease or its spread
  • Recurrences or additional malignancies
  • Subsequent treatment
• Encourage other cancer survivors to also obtain follow-up