Data Collection

The information collected by cancer registries can be placed into five categories: patient demographics, tumor (cancer) identification, treatment, and outcome.

Demographic data consists of the personal information about a patient such as the patient's name, age, gender, race, ethnicity, birthplace, residence, phone number, etc. This information individually identifies the cancer patient. Without individual identifiers to check for duplicate registrations at the central registry level, the data would be inaccurate and unsuitable for analysis.

Cancer information results from the diagnostic findings about a patient. It includes the primary site of the malignancy, and its cell type. Dates and results of procedures used to diagnose cancer are also recorded.

Data collection continues after a patient is diagnosed with cancer. Information regarding cancer extent of disease and staging which may include Summary Stage, TNM, pediatric staging, site-specific data items is recorded. Treatment such as surgery, radiation therapy, chemotherapy, hormone, immunotherapy, and other treatment are documented.

Cancer registries continue to gather data after the cancer patient has received treatment. This data consists of information concerning the outcome of the treatment. Patient status is updated regularly to maintain accurate surveillance information and determine if a recurrence has occurred. Lifetime follow-up on patients permits registries to record information about patient survival.

Updated: December 11, 2023