What is a Central Cancer Registry?
A central cancer registry is a data system that collects, stores, analyzes, and interprets cancer data from a defined geographical area. The basic information comes from patients' medical records. All names and data that could identify a patient are kept confidential.
For every cancer case, the registry includes:
- When the cancer was diagnosed
- Where the cancer occurred in the body
- How far advanced the cancer was when it was found
- The specific type of cancer
- The patient's first course of treatment
- Demographics like age, race, gender and county of residence
Where does the information on cancer cases come from?
The majority of cases are reported electronically from hospitals with existing cancer registries. The remaining information comes from non-registry hospitals (hospitals without cancer registries), independent pathology laboratories, freestanding treatment centers, and physician offices. Information from non-registry hospitals, independent pathology labs, and freestanding treatment centers is collected by SCCCR staff. Physician offices are asked to report information only on their cancer cases not referred to a hospital setting.
What about patients who are diagnosed or treated out of state, does the registry get these?
Yes. The SCCCR is a member of the CDC National Interstate Data Exchange Agreement (N-IDEA) that allows states to share resident cases of cancer with each other. Therefore, if an SC resident is diagnosed or treated in another member state, the information about that patient is reported to the SCCCR. Most states are members of N-IDEAS.
What types of cancer are reported to the central cancer registry?
All cancers diagnosed on or after January 1, 1996 among SC residents. There are two exclusions below:
- Basal and squamous cell carcinomas of non-genital skin are not reported.
- Carcinoma in-situ of the cervix cases are not reported.
Is the cancer registry data of good quality?
Yes. All cancer registry data go through a stringent quality control process. Currently, the SCCCR performs visual review as well as a series of computerized data edits. The SCCCR also conducts quality control audits of its data, including case-finding, coding reliability, and abstracting audits.
In addition, the SCCCR participates in CDC national data quality audits. The audits assess the level of data quality and case completeness of cancer reporting in the SCCCR. The SCCCR has met the national quality standards for all audits conducted.
Data from the SCCCR are submitted to the North American Association of Central Cancer Registries (NAACCR) for an evaluation of completeness, accuracy, and timeliness each year since a formal certification process was established in 1997. The SCCCR consistently receives NAACCR certification. The SCCCR has achieved Gold or Silver certification for each year since 1997. SCCCR data are included in the national publication for United States Cancer Statistics (USCS), now covering 98% of the US population.
What are the benefits of a Central Cancer Registry?
- Determines the number, types, and severity of new cancer cases diagnosed each year in SC
- Studies trends of how often cancers occur in a defined area
- Identifies high risk groups which need to be targeted for cancer education, prevention, and screening
- Provides information necessary to answer public questions about cancer in the community
- Investigates the possible occurrence of more cancer cases than normal in geographical area
- Provides information for scientific and medical research about cancer in SC
- Contributes SC Cancer Incidence to the official USCS publication
Are there laws that established the South Carolina Central Cancer Registry?
Yes. The U.S. Congress established the National Program of Cancer Registries (NPCR) at the Centers for Disease Control in 1992 by enacting the Cancer Registries Amendment Act, Public Law 102-515.
The SC General Assembly passed the Central Cancer Registry Act SC Law 44-35 on June 6, 1996. The Central Cancer Registry Act supports the assurances of Public Law 102-515 and states that all healthcare providers must report cancer cases to the SCCCR. The Act also ensures that patient confidentiality, as well as physician confidentiality, is protected. Reporting sources who submit data to the SCCCR are also protected from liability incurred through compliance with the state law.