FAQ's about Cancer Incidence Data 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? More than 80% 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. SCCCR staff collects information from non-registry hospitals, independent pathology labs, and freestanding treatment centers. 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 has case sharing agreements with 16 states, including all the bordering states. Therefore, if a SC resident is diagnosed or treated in one of these 16 states, the information about that patient is reported to the SCCCR. What types of cancer are reported to the central cancer registry? All cancers diagnosed on or after January 1, 1996 among SC residents. Basal and squamous cell carcinomas of the skin are not reported. Basal and squamous cell carcinomas of the genital sites are reported. Carcinoma in situ cancers of the cervix are not reported. Is the cancer registry data of good quality? Yes. All cancer registry data goes through a stringent quality control process. Currently the SCCCR visually reviews 100% of its data, and a series of computerized data edits are run on all data. The SCCCR also conducts quality control audits of its data, including case-finding, coding reliability, and reabstracting audits. In addition, the SCCCR participated in a national data quality audit in March 2000. The audit assessed the level of data quality and case completeness of cancer reporting in the SCCCR. The SCCCR was found to have a completeness rate of 96.9% and an accuracy rate of 96.4%, both of which exceeded the national standard of 95%. 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. In each year (1997, 1998, 1999, 2000), the SCCCR has received NAACCR certification. What are the benefits of a Central Cancer Registry? 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. What are the confidentiality rules in regards to the Cancer Registry? In 1996 the U.S. Congress passed the Health Insurance Portability and Accountability Act or HIPAA, requiring uniform federal privacy protections for individually identifiable health information. HIPAA allows for the reporting of identifiable cancer data to public health entities. Because the SCCCR falls under the definition of a public health entity, HIPAA allows facilities and physician practices to continue to report data to the SCCCR in compliance with state law. Any information that can identify the cancer patient is kept confidential in accordance with the administrative policy of the Department of Environmental Control. Only the individual patient or an authorized representative is able to open the information for inspection. Why doesn't the mapping page map rates less than one? The maps generated take the rate and rounds it up or down according to the rate. Rates above .50 are coded into the 1-4 group and rates less than .50 are coded as a zero. To get the real rates please generate the frequency and rate in the "create a table" page selecting all counties and other characteristics as desired. If the legend on the map has label 1-4 and 4-8 and the frequency or rate is 4.0, which level will this frequency or rate fall into? Frequency or rates equaling the dividing point in the legend fall into the larger of the categories. A frequency or rate of 4.0 will fall into the 4-8 category. Why do I get a N/A sometimes for the rate? This is due to missing denominators in the rate calculation. This will always occur for the unknown category, marital status, and ethnicity when live birth is the indicator chosen. Other times this will occur when there were no denominator (live births) for the selection chosen, the frequency of the characteristic chosen will always be zero in this case and the rate can be seen as zero. Why do I get N/A sometimes for the 95% confidence intervals? Users will see an N/A for the 95% confidence intervals when the rate is either N/A or equals zero. Who do I contact for more analysis? Please see the S.C. Central Cancer Registry Homepage for further information. Why doesn't the "print" file menu item work for the mapping output? You must use the print option button on the map interface instead of the "print" file menu item in your browser due to the way the Geographic Information System software is configured. Why doesn't the print screen and identify results from the map display always? This is due to the fact that the user has a pop-up blocker enabled on their browser. Some screens in the mapping interface are seen as pop-ups by pop-up blockers embedded in browsers or toolbars. Director of Biostatistics Jun Tang, PhD, MS Office: (803) 898-3632 Fax # (803) 898-3599 E-mail:tangj@dph.sc.gov Special Projects Manager Laura Sanders Telephone # (803) 819-4271 Fax # (803) 898-3599 E-mail:sanderlc@dph.sc.gov Statistician Virginia Andrews, MSPH Telephone # (803) 898-3074 Fax # (803) 898-3599 E-mail:andrewvc@dph.sc.gov