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State Cancer Registries: Status of Authorizing Legislation and Enabling Regulations -- United States, October 1993
Population-based cancer registries have identified cancer incidence rates indicating that the burden of cancer in the United States is substantial and varies widely by geographic location and ethnicity. However, for most existing state cancer registries, resources are inadequate for insuring minimum standards for quality and for completeness of case information. In October 1992, Congress enacted the Cancer Registries Amendment Act* that authorized CDC to establish a national program in support of cancer registries. The goal of this program is to enhance existing state cancer registries and to help establish statewide cancer registries so that all states have population-based cancer registries meeting minimum standards for completeness, timeliness, and quality. To ensure complete and timely reporting of newly diagnosed cases of cancer, the federal statute requires authorization of cancer registries under state-specific laws and promulgation of regulations that ensure case reporting and use of data for research. This report extends efforts by the National Cancer Institute (1) to assess existing state laws and regulations to determine how they compare to state-specific legislation required in the cancer registries act.
In August and September 1993, all 50 states provided CDC with copies of state laws, statutes, regulations, and rules related to cancer registries in effect as of October 1, 1993. State law was defined as legislation enacted by the state legislature. Regulations were defined as measures promulgated by agencies such as state health departments and, although enforceable as law, can be modified by administrative action. In addition to enacting an authorizing law, each state is required to promulgate eight categories of regulations regarding the collection and use of cancer data; these regulations are intended to 1) require reporting of newly diagnosed cancer cases by hospitals and other health-care facilities; 2) require reporting of cancer cases by physicians and other health-care practitioners; 3) guarantee access by the statewide cancer registry to all records of medical status of persons with cancer; 4) require the use of standardized reporting formats; 5) ensure confidentiality of cancer case data; 6) allow use of confidential case data by certain researchers; 7) authorize the conduct of studies using cancer registry data; and 8) ensure protection of persons complying with the law from liability.
On October 1, 1993, nine states had a law authorizing state cancer registries and had all essential regulations in place (Table_1). Twenty-nine states had laws authorizing state cancer registries but did not have all essential regulations (Table_1). Seven states had only regulations authorizing cancer registries. Four states had no law or regulation authorizing cancer registries and had none of the essential regulations. Of the other 46 states, 38 required reporting on cancer cases by health-care facilities, and 44 required protection of the confidentiality of case information. Reported by: Epidemiology and Statistics Br, Div of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, CDC.
Editorial Note: Comprehensive, timely, and accurate information regarding cancer incidence and stage at diagnosis is essential for monitoring cancer trends and identifying variations in incidence by factors such as age, race/ethnicity, and geographic region. Cancer incidence rates vary by ethnicity, but whether these variations reflect differences in factors such as socioeconomic status, access to medical care, prevalence of specific risks, or misclassification of ethnicity is not known. Registries provide a means for collecting such information and may assist in conducting population-based epidemiologic and biologic research, allocating of health resources, and evaluating cancer-control and cancer-prevention programs.
At the state level, both authorizing legislation and enabling regulations are necessary to establish and maintain statewide, population-based cancer registries. The findings in this report indicate that legislation and regulations related to cancer registries vary widely among states. For states seeking federal funding, the cancer registries act can provide an incentive to enact needed legislation or regulations.
In fiscal year 1994, CDC will offer support to states, the District of Columbia, and Puerto Rico to enhance existing cancer registries and to plan and implement statewide cancer registries in states and territories that do not have registries. This support is intended to ensure that state cancer registries are population-based and meet minimum standards of completeness, timeliness, and quality. In addition, CDC will assist states in the development of model state legislation. These efforts also should enable evaluation of progress toward cancer control and national health objectives for the year 2000 (2).
* Copies of the Cancer Registries Amendment Act, Public Law
102-515, section(c)(2)(D), October 24, 1992, are available from
CDC's Division of Cancer Prevention and Control, National Center
for Chronic Disease Prevention and Health Promotion, 4770 Buford
Highway, NE, Mailstop K-55, Atlanta, GA 30341-3724; telephone (404)
TABLE 1. Status of authorizing legislation and enabling regulations for state cancer registration -- United States, October 1, 1993 =============================================================================================================================================== Authorizing Facility Physician Record Standard Case Research Research Liability State law* reporting reporting access format confidentiality access conduct protection --------------------------------------------------------------------------------------------------------------------------------------------- Alabama no no no no no no no no no Alaska no yes no no yes yes no no no Arizona yes yes yes yes yes yes no no no Arkansas yes no no no no yes yes yes no California yes yes yes yes yes yes yes yes yes Colorado yes yes no yes yes yes yes yes no Connecticut no yes no no yes yes yes yes no Delaware yes yes no yes yes yes no no yes Florida yes yes no no yes yes yes yes yes Georgia no yes no no yes yes yes yes yes Hawaii yes yes no no yes yes yes no yes Idaho no yes yes no yes yes yes yes no Illinois yes yes no yes yes yes yes yes yes Indiana yes yes yes yes yes yes yes yes yes Iowa no no no no no yes yes yes yes Kansas no yes no no yes yes no no no Kentucky yes yes no yes yes yes yes yes yes Louisiana yes yes no yes yes yes no yes yes Maine yes yes no yes yes yes no yes yes Maryland yes yes no yes yes yes yes yes no Massachusetts yes yes no yes yes yes yes yes yes Michigan yes yes no yes yes yes yes yes yes Minnesota yes yes yes yes yes yes yes yes yes Mississippi yes no no no no yes yes yes yes Missouri yes yes no no yes yes yes yes yes Montana yes yes no no yes yes no no no Nebraska yes yes no yes yes yes yes yes yes Nevada yes yes no yes yes yes yes yes yes New Hampshire yes yes yes yes yes yes yes yes no New Jersey yes yes yes yes yes yes yes yes yes New Mexico no no no no no yes no no yes New York yes yes yes yes yes yes yes yes yes North Carolina yes no yes no yes yes no no yes North Dakota no no no no no no no no no Ohio yes yes yes yes yes yes yes yes yes Oklahoma yes no no no yes yes yes yes no Oregon no no no no no no no no no Pennsylvania yes yes no yes yes yes yes yes no Rhode Island yes yes yes yes yes yes yes yes yes South Carolina no no no yes no no no no yes South Dakota yes no no no yes yes yes yes yes Tennessee yes yes no yes yes yes yes yes no Texas yes yes no no yes yes yes yes yes Utah no no no no no no no no no Vermont yes yes yes yes yes yes yes yes yes Virginia yes yes yes yes yes yes no yes no Washington yes yes yes yes yes yes yes yes yes West Virginia yes yes yes yes yes yes no yes yes Wisconsin yes yes yes no yes yes no no yes Wyoming yes yes yes no no no no no no Total with legislation/regulations 38 38 17 27 40 44 32 35 31 --------------------------------------------------------------------------------------------------------------------------------------------- * States that have a regulation authorizing a state cancer registry are Alaska, Connecticut, Georgia, Idaho, Iowa, Kansas, and Utah. ===============================================================================================================================================
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