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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

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).

References

  1. Fisher R, Haenlein M. Legislative authorizations for cancer registries. In: National Cancer Institute, National Institutes of Health. State Cancer Legislative Database Update. Bethesda, Maryland: US Department of Health and Human Services, Public Health Service, National Institutes of Health, National Cancer Institute, April 1991:8-15.

  2. Public Health Service. Healthy people 2000: national health promotion and disease prevention objectives -- full report, with commentary. Washington, DC: US Department of Health and Human Services, Public Health Service, 1991; DHHS publication no. (PHS)91-50212.

* 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) 488-4682.
Table_1
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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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