Cancer registries collect many different types of data, including patient demographics, tumor (cancer) characteristics, treatment, and outcomes. After collecting the data, registries store and manage them.
Cancer data collection begins by identifying people with cancer who have been diagnosed or received cancer care in hospitals, outpatient clinics, radiology departments, doctors’ offices, laboratories, surgical centers, or from other providers (such as pharmacists) who diagnose or treat cancer patients. All 50 states have laws requiring newly diagnosed cancers to be reported to a central registry.
Cancer registries review these reported cases and determine whether such information is reportable according to law. If so, registries pull cancer information as required by the North American Association of Central Cancer Registries’ (NAACCR) Data Standards from the medical records for those cases.
The information collected by cancer registries can be placed into several categories:
- Patient demographics: Patient demographic information identifies the cancer patient. It includes the patient’s name, age, gender, race, ethnicity, and birthplace.
- Tumor (cancer) characteristics: Tumor characteristics describe tumor cell type(s), biological and clinical aspects of the malignancy (such as the body organ where the cancer started), and now genomic information on the tumor (such as specific biomarkers that might predict outcomes or response to specific therapies).
- Stage of disease: Cancer stage describes the extent of the disease, such as how far the cancer has spread. This information informs whether a cancer has been diagnosed early or late and what treatment plans should be considered.
- Treatment: Treatment information captures the various options selected to treat the cancer patient, such as surgery, radiation therapy, chemotherapy, hormone therapy, and immunotherapy.
- Outcomes:Outcomes information consists of patient’s vital status, cause of death, and survival time.
The cancer registries then store the collected data and manage them in a secure environment.
Relevant regulations, policies, and laws are strictly implemented to guide the handling of information in cancer registries. These measures protect the privacy and confidentiality of cancer patients, physicians and other healthcare professionals, and healthcare facilities.