Collapse to view only § 280e. National program of cancer registries
- § 280e. National program of cancer registries
- § 280e-1. Planning grants regarding registries
- § 280e-2. Technical assistance in operations of statewide cancer registries
- § 280e-3. Study in certain States to determine factors contributing to elevated breast cancer mortality rates
- § 280e-3a. National childhood cancer registry
- § 280e-4. Authorization of appropriations
- § 280e-5. Voluntary registry for firefighter cancer incidence
§ 280e. National program of cancer registries
(a) In general
(1) Statewide cancer registriesThe Secretary, acting through the Director of the Centers for Disease Control, may make grants to States, or may make grants or enter into contracts with academic or nonprofit organizations designated by the State to operate the State’s cancer registry in lieu of making a grant directly to the State, to support the operation of population-based, statewide registries to collect, for each condition specified in paragraph (2)(A), data concerning—
(A) demographic information about each case of cancer;
(B) information on the industrial or occupational history of the individuals with the cancers, to the extent such information is available from the same record;
(C) administrative information, including date of diagnosis and source of information;
(D) pathological data characterizing the cancer, including the cancer site, stage of disease (pursuant to Staging Guide), incidence, and type of treatment; and
(E) other elements determined appropriate by the Secretary.
(2) Cancer; benign brain-related tumors
(A) In generalFor purposes of paragraph (1), the conditions referred to in this paragraph are the following:
(i) Each form of in-situ and invasive cancer (with the exception of basal cell and squamous cell carcinoma of the skin), including malignant brain-related tumors.
(ii) Benign brain-related tumors.
(B) Brain-related tumorFor purposes of subparagraph (A):
(i) The term “brain-related tumor” means a listed primary tumor (whether malignant or benign) occurring in any of the following sites:(I) The brain, meninges, spinal cord, cauda equina, a cranial nerve or nerves, or any other part of the central nervous system.(II) The pituitary gland, pineal gland, or craniopharyngeal duct.
(ii) The term “listed”, with respect to a primary tumor, means a primary tumor that is listed in the International Classification of Diseases for Oncology (commonly referred to as the ICD–O).
(iii) The term “International Classification of Diseases for Oncology” means a classification system that includes topography (site) information and histology (cell type information) developed by the World Health Organization, in collaboration with international centers, to promote international comparability in the collection, classification, processing, and presentation of cancer statistics. The ICD–O system is a supplement to the International Statistical Classification of Diseases and Related Health Problems (commonly known as the ICD) and is the standard coding system used by cancer registries worldwide. Such term includes any modification made to such system for purposes of the United States. Such term further includes any published classification system that is internationally recognized as a successor to the classification system referred to in the first sentence of this clause.
(C) Statewide cancer registry
(b) Matching funds
(1) In general
(2) Determination of amount of non-Federal contribution; maintenance of effort
(A) Non-Federal contributions required in paragraph (1) may be in cash or in kind, fairly evaluated, including plant, equipment, or services. Amounts provided by the Federal Government, or services assisted or subsidized to any significant extent by the Federal Government, may not be included in determining the amount of such non-Federal contributions.
(B) With respect to a State in which the purpose described in subsection (a) is to be carried out, the Secretary, in making a determination of the amount of non-Federal contributions provided under paragraph (1), may include only such contributions as are in excess of the amount of such contributions made by the State toward the collection of data on cancer for the fiscal year preceding the first year for which a grant under subsection (a) is made with respect to the State. The Secretary may decrease the amount of non-Federal contributions that otherwise would have been required by this subsection in those cases in which the State can demonstrate that decreasing such amount is appropriate because of financial hardship.
(c) Eligibility for grants
(1) In general
(2) AssurancesEach applicant, prior to receiving Federal funds under subsection (a), shall provide assurances satisfactory to the Secretary that the applicant will—
(A) provide for the establishment of a registry in accordance with subsection (a);
(B) comply with appropriate standards of completeness, timeliness, and quality of population-based cancer registry data;
(C) provide for the annual publication of reports of cancer data under subsection (a); and
(D) provide for the authorization under State law of the statewide cancer registry, including promulgation of regulations providing—
(i) a means to assure complete reporting of cancer cases (as described in subsection (a)) to the statewide cancer registry by hospitals or other facilities providing screening, diagnostic or therapeutic services to patients with respect to cancer;
(ii) a means to assure the complete reporting of cancer cases (as defined in subsection (a)) to the statewide cancer registry by physicians, surgeons, and all other health care practitioners diagnosing or providing treatment for cancer patients, except for cases directly referred to or previously admitted to a hospital or other facility providing screening, diagnostic or therapeutic services to patients in that State and reported by those facilities;
(iii) a means for the statewide cancer registry to access all records of physicians and surgeons, hospitals, outpatient clinics, nursing homes, and all other facilities, individuals, or agencies providing such services to patients which would identify cases of cancer or would establish characteristics of the cancer, treatment of the cancer, or medical status of any identified patient;
(iv) for the reporting of cancer case data to the statewide cancer registry in such a format, with such data elements, and in accordance with such standards of quality timeliness and completeness, as may be established by the Secretary;
(v) for the protection of the confidentiality of all cancer case data reported to the statewide cancer registry, including a prohibition on disclosure to any person of information reported to the statewide cancer registry that identifies, or could lead to the identification of, an individual cancer patient, except for disclosure to other State cancer registries and local and State health officers;
(vi) for a means by which confidential case data may in accordance with State law be disclosed to cancer researchers for the purposes of cancer prevention, control and research;
(vii) for the authorization or the conduct, by the statewide cancer registry or other persons and organizations, of studies utilizing statewide cancer registry data, including studies of the sources and causes of cancer, evaluations of the cost, quality, efficacy, and appropriateness of diagnostic, therapeutic, rehabilitative, and preventative services and programs relating to cancer, and any other clinical, epidemiological, or other cancer research; and
(viii) for protection for individuals complying with the law, including provisions specifying that no person shall be held liable in any civil action with respect to a cancer case report provided to the statewide cancer registry, or with respect to access to cancer case information provided to the statewide cancer registry.
(d) Relationship to certain programs
(1) In general
(2) Supplanting of activities
(3) Transfer of responsibility
(4) Coordination
(e) Requirement regarding certain study on breast cancer
(July 1, 1944, ch. 373, title III, § 399B, formerly § 399H, as added Pub. L. 102–515, § 3, Oct. 24, 1992, 106 Stat. 3372; renumbered § 399B and amended Pub. L. 106–310, div. A, title V, § 502(2)(A), (B), Oct. 17, 2000, 114 Stat. 1115; Pub. L. 107–260, § 2(a), Oct. 29, 2002, 116 Stat. 1743.)
§ 280e–1. Planning grants regarding registries
(a) In general
(1) States
(2) Other entities
(b) Application
(July 1, 1944, ch. 373, title III, § 399C, formerly § 399I, as added Pub. L. 102–515, § 3, Oct. 24, 1992, 106 Stat. 3375; renumbered § 399C, Pub. L. 106–310, div. A, title V, § 502(2)(A), Oct. 17, 2000, 114 Stat. 1115.)
§ 280e–2. Technical assistance in operations of statewide cancer registries
The Secretary, acting through the Director of the Centers for Disease Control, may, directly or through grants and contracts, or both, provide technical assistance to the States in the establishment and operation of statewide registries, including assistance in the development of model legislation for statewide cancer registries and assistance in establishing a computerized reporting and data processing system.
(July 1, 1944, ch. 373, title III, § 399D, formerly § 399J, as added Pub. L. 102–515, § 3, Oct. 24, 1992, 106 Stat. 3376; renumbered § 399D, Pub. L. 106–310, div. A, title V, § 502(2)(A), Oct. 17, 2000, 114 Stat. 1115.)
§ 280e–3. Study in certain States to determine factors contributing to elevated breast cancer mortality rates
(a) In general
(b) Relevant States
(c) Cooperation of State
(d) Planning, commencement, and duration
(July 1, 1944, ch. 373, title III, § 399E, formerly § 399K, as added Pub. L. 102–515, § 3, Oct. 24, 1992, 106 Stat. 3376; renumbered § 399E and amended Pub. L. 106–310, div. A, title V, § 502(2)(A), (C), Oct. 17, 2000, 114 Stat. 1115; Pub. L. 109–482, title I, § 104(b)(2)(A), Jan. 15, 2007, 120 Stat. 3693.)
§ 280e–3a. National childhood cancer registry
(a) In general
(b) Activities
The grants described in subsection (a) may be used for—
(1) identifying, recruiting, and training potential sources for reporting childhood, adolescent, and young adult cancer cases;
(2) developing practices to ensure early inclusion of childhood, adolescent, and young adult cancer cases in State cancer registries through the use of electronic reporting;
(3) collecting and submitting deidentified data to the Centers for Disease Control and Prevention for inclusion in a national database that includes information on childhood, adolescent, and young adult cancers; and
(4) improving State cancer registries and the database described in paragraph (3), as appropriate, including to support the early inclusion of childhood, adolescent, and young adult cancer cases.
(c) Coordination
(d) Informed consent and privacy requirements and coordination with existing programs
(July 1, 1944, ch. 373, title III, § 399E–1, as added Pub. L. 110–285, § 4(b)(1), July 29, 2008, 122 Stat. 2630; amended Pub. L. 115–180, title I, § 102(a), June 5, 2018, 132 Stat. 1385.)
§ 280e–4. Authorization of appropriations
(a) Registries
(b) Breast cancer study
(July 1, 1944, ch. 373, title III, § 399F, formerly § 399L, as added Pub. L. 102–515, § 3, Oct. 24, 1992, 106 Stat. 3376; amended Pub. L. 103–43, title XX, § 2003, June 10, 1993, 107 Stat. 208; Pub. L. 103–183, title VII, § 705(c), Dec. 14, 1993, 107 Stat. 2241; Pub. L. 105–340, title II, § 202, Oct. 31, 1998, 112 Stat. 3194; renumbered § 399F and amended Pub. L. 106–310, div. A, title V, § 502(2)(A), (D), Oct. 17, 2000, 114 Stat. 1115; Pub. L. 110–285, § 4(b)(2), July 29, 2008, 122 Stat. 2631.)
§ 280e–5. Voluntary registry for firefighter cancer incidence
(a) In general
(b) Use of Firefighter RegistryThe Firefighter Registry may be used for the following purposes:
(1) To improve data collection and data coordination activities related to the nationwide monitoring of the incidence of cancer among firefighters.
(2) To collect, consolidate, and maintain, consistent with subsection (g), epidemiological information and analyses related to cancer incidence and trends among firefighters 1
1 So in original. Probably should be followed by a period.
(c) Relevant data
(1) Data collectionIn carrying out the voluntary data collection for purposes of inclusion under the Firefighter Registry, the Secretary may collect the following:
(A) Information, as determined by the Secretary under subsection (d)(1), of volunteer, paid-on-call, and career firefighters, independent of cancer status or diagnosis.
(B) Individual risk factors and occupational history of firefighters.
(C) Information, if available, related to—
(i) basic demographic information, including—(I) the age of the firefighter involved during the relevant dates of occupation as a firefighter; and(II) the age of cancer diagnosis;
(ii) the status of the firefighter as either volunteer, paid-on-call, or career firefighter;
(iii) the total number of years of occupation as a firefighter and a detailing of additional employment experience, whether concurrent, before, or anytime thereafter;
(iv)(I) the approximate number of fire incidents attended, including information related to the type of fire incidents and the role of the firefighter in responding to the incident; or(II) in the case of a firefighter for whom information on such number and type is unavailable, an estimate of such number and type based on the method developed under subsection (d)(1)(D); and
(v) other medical information and health history, including additional risk factors, as appropriate, and other information relevant to a cancer incidence study of firefighters.
(2) Information on diagnoses and treatmentIn carrying out paragraph (1), with respect to diagnoses and treatment of firefighters with cancer, the Secretary shall, as appropriate, enable the Firefighter Registry to electronically connect to State-based cancer registries, for a purpose described by clause (vi) or (vii) of section 280e(c)(2)(D) of this title, to obtain—
(A) date of diagnoses and source of information; and
(B) pathological data characterizing the cancer, including cancer site, state of disease (pursuant to Staging Guide), incidence, and type of treatment.
(d) Firefighter Registry coordination strategy
(1) Required strategyThe Secretary shall, in consultation with the relevant stakeholders identified in subsection (e), including epidemiologists and pathologists, develop a strategy to coordinate data collection activities, including within existing State registries, for inclusion in the Firefighter Registry established under this Act. The strategy may include the following:
(A) Increasing awareness of the Firefighter Registry and encouraging participation among volunteer, paid-on-call, and career firefighters.
(B) Consideration of unique data collection needs that may arise to generate a statistically reliable representation of minority, female, and volunteer firefighters, including methods, as needed, to encourage participation from such populations.
(C) Information on how the Secretary will store data described in subsection (c)(1) and provide electronic access to relevant health information described in subsection (c)(2).
(D) Working in consultation with the experts described in subsection (e), a reliable and standardized method for estimating the number of fire incidents attended by a firefighter as well as the type of fire incident so attended in the case such firefighter is unable to provide such information.
(2) Report to Congress
(3) Guidance for inclusion and maintenance of data on firefightersThe Secretary shall develop, in consultation with the stakeholders identified in subsection (e), State health agencies, State departments of homeland security, and volunteer, paid-on-call, combination, and career firefighting agencies, a strategy for inclusion of firefighters in the registry that are representative of the general population of firefighters, that outlines the following:
(A) How new information about firefighters will be submitted to the Firefighter Registry for inclusion.
(B) How information about firefighters will be maintained and updated in the Firefighter Registry over time.
(C) A method for estimating the number of fire incidents attended by a firefighter as well as the type of fire incident so attended in the case such firefighter is unable to provide such information.
(D) Further information, as deemed necessary by the Secretary.
(e) Consultation and reportThe Secretary shall consult with non-Federal experts on the Firefighter Registry established under this section, and shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report that includes, as appropriate, information on goals achieved and improvements needed to strengthen the Firefighter Registry. Such non-Federal experts shall include the following:
(1) Public health experts with experience in developing and maintaining cancer registries.
(2) Epidemiologists with experience in studying cancer incidence.
(3) Clinicians with experience in diagnosing and treating cancer incidence.
(4) Active and retired volunteer, paid-on-call, and career firefighters as well as relevant national fire and emergency response organizations.
(f) Research availability
(g) Privacy
(h) Authorization of funds
(Pub. L. 115–194, § 2, July 7, 2018, 132 Stat. 1506.)