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42 U.S.C. § 280eNational program of cancer registries

submitted 82 years ago by Pub. L. 102-515 to r/title-42-THE-PUBLIC-HEALTH-AND-WELFARE · 1,565 words · no verdicts yet

in plain englishAI-generated · not legal advice

This law lets the CDC fund state cancer registries that track cancer cases and certain brain tumors. States must match federal money and follow strict rules on data quality, privacy, and legal protection for reporters. The program must not replace or duplicate the existing federal SEER cancer program.

(a) In general. (1) Statewide cancer registries. The Secretary, through the CDC Director, may give grants to States. Instead of granting a State directly, the Secretary may also give a grant to, or contract with, an academic or nonprofit organization the State picks to run its cancer registry. This money supports statewide registries covering the whole population, which collect — for each condition listed in paragraph (2)(A) — data on: (A) basic facts about each cancer case; (B) the person's work and industry history, if that information is in the same record; (C) administrative facts, including the date of diagnosis and where the information came from; (D) medical facts describing the cancer, including where it is, its stage (based on the Staging Guide), how common it is, and the type of treatment given; and (E) any other information the Secretary decides is appropriate. (2) Cancer and benign brain-related tumors. (A) The conditions covered in paragraph (1) are: (i) every kind of cancer that is in place or has spread (except basal cell and squamous cell skin cancer), including cancerous brain-related tumors; and (ii) non-cancerous brain-related tumors. (B) For this paragraph: (i) A "brain-related tumor" is a listed primary tumor, cancerous or not, found in the brain, the membranes covering the brain, the spinal cord, the cauda equina, a cranial nerve, any other part of the central nervous system, the pituitary gland, the pineal gland, or the craniopharyngeal duct. (ii) "Listed" means the tumor appears on the International Classification of Diseases for Oncology, known as the ICD–O. (iii) The "International Classification of Diseases for Oncology" is a classification system — covering both where a tumor is and its cell type — built by the World Health Organization with international centers, to make cancer statistics comparable across countries. It supplements the general International Classification of Diseases (the ICD) and is the standard coding system cancer registries use worldwide. This term includes any U.S. version of that system, and any internationally recognized system that later replaces it. (C) Wherever this section mentions "cancer registries," it means the registries described in this subsection. (b) Matching funds. (1) The Secretary may only give a grant under subsection (a) if the State — or the academic or nonprofit organization the State picked to run its registry — agrees to contribute non-federal money toward the costs. This contribution, made directly or through donations, must equal at least 25 percent of the costs, or $1 for every $3 of federal money in the grant. (2) In figuring this non-federal contribution: (A) It can be cash or in-kind support — like equipment, land, or services — fairly valued. Money that came from the federal government, or services that the federal government paid for or subsidized to a significant degree, do not count. (B) For a given State, the Secretary can only count non-federal contributions above what the State was already spending to collect cancer data in the fiscal year right before its first grant year. The Secretary may lower the required non-federal amount if the State shows that keeping it would cause financial hardship. (c) Eligibility for grants. (1) The Secretary cannot make a grant under subsection (a) unless an application has been submitted and approved, in whatever form, manner, and with whatever supporting information the Secretary requires. The Secretary cannot approve an application unless it assures that the applicant will use the money only for the approved purposes, that it will set up proper financial controls and accounting to track the federal funds, and that it will comply with the peer review requirements in sections 289 and 289a of this title. (2) Before getting federal funds, each applicant must also assure the Secretary that it will: (A) set up a registry as described in subsection (a); (B) meet appropriate standards for how complete, timely, and high-quality the registry's data is; (C) publish a yearly report of the cancer data it collects; and (D) get state-law authority for the statewide registry, including rules that: (i) make sure hospitals and other facilities that screen, diagnose, or treat cancer patients fully report their cancer cases to the registry; (ii) make sure physicians, surgeons, and other health care practitioners who diagnose or treat cancer patients fully report their cases too, except for cases already reported by a hospital or facility that referred or admitted the patient; (iii) let the registry access all the relevant records held by doctors, surgeons, hospitals, outpatient clinics, nursing homes, and other providers, so it can identify cancer cases or learn about a case's or patient's characteristics, treatment, or status; (iv) require cancer data to be reported to the registry in the format, with the data points, and to the standards of quality, timeliness, and completeness the Secretary sets; (v) protect the confidentiality of all reported cancer data, including a ban on sharing anything that identifies, or could help identify, a cancer patient — except to other state cancer registries and to state and local health officers; (vi) allow confidential data, consistent with state law, to be shared with cancer researchers to help prevent, control, and study cancer; (vii) authorize the registry or others to run studies using its data, including studies of what causes cancer, evaluations of the cost, quality, and effectiveness of cancer-related diagnosis, treatment, rehabilitation, and prevention programs, and other cancer research; and (viii) protect people who follow the law — so that no one can be sued in civil court just for reporting a cancer case to the registry, or for giving access to case information already provided to the registry. (d) How this relates to other programs. (1) This section does not replace or shrink the Surveillance, Epidemiology, and End Results Program, known as SEER, which is run by the Director of the National Cancer Institute. (2) In places where both this program and SEER operate, the Secretary must make sure SEER's support is not replaced, and that any extra activities here follow the standards in subsection (c)(2)(C) and (D) and are properly coordinated with SEER. (3) The Secretary cannot move responsibility for running SEER away from the National Cancer Institute's Director. (4) To make federally supported efforts as efficient and effective as possible, the Secretary must coordinate the programs under this part with the cancer registry programs the federal government already supports. (e) A special rule for a breast cancer study. For a grant under subsection (a) to a State named in section 280e–3(b), the Secretary may set whatever conditions are necessary to help collect the data needed for the study required under that section.
the actual law source: uscode.house.gov ↗public domain
(a) In general
(1) Statewide cancer registries

The 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 general

For 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 tumor

For 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

References in this section to cancer registries shall be considered to be references to registries described in this subsection.

(b) Matching funds
(1) In general

The Secretary may make a grant under subsection (a) only if the State, or the academic or nonprofit private organization designated by the State to operate the cancer registry of the State, involved agrees, with respect to the costs of the program, to make available (directly or through donations from public or private entities) non-Federal contributions toward such costs in an amount that is not less than 25 percent of such costs or $1 for every $3 of Federal funds provided in the grant.

(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

No grant shall be made by the Secretary under subsection (a) unless an application has been submitted to, and approved by, the Secretary. Such application shall be in such form, submitted in such a manner, and be accompanied by such information, as the Secretary may specify. No such application may be approved unless it contains assurances that the applicant will use the funds provided only for the purposes specified in the approved application and in accordance with the requirements of this section, that the application will establish such fiscal control and fund accounting procedures as may be necessary to assure proper disbursement and accounting of Federal funds paid to the applicant under subsection (a), and that the applicant will comply with the peer review requirements under sections 289 and 289a of this title.

(2) Assurances

Each 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

This section may not be construed to act as a replacement for or diminishment of the program carried out by the Director of the National Cancer Institute and designated by such Director as the Surveillance, Epidemiology, and End Results Program (SEER).

(2) Supplanting of activities

In areas where both such programs exist, the Secretary shall ensure that SEER support is not supplanted and that any additional activities are consistent with the guidelines provided for in subsection (c)(2)(C) and (D) and are appropriately coordinated with the existing SEER program.

(3) Transfer of responsibility

The Secretary may not transfer administration responsibility for such SEER program from such Director.

(4) Coordination

To encourage the greatest possible efficiency and effectiveness of Federally supported efforts with respect to the activities described in this subsection, the Secretary shall take steps to assure the appropriate coordination of programs supported under this part with existing Federally supported cancer registry programs.

(e) Requirement regarding certain study on breast cancer

In the case of a grant under subsection (a) to any State specified in subsection (b) of section 280e–3 of this title, the Secretary may establish such conditions regarding the receipt of the grant as the Secretary determines are necessary to facilitate the collection of data for the study carried out under such section.

Source credit: (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.)

history & why it existsrecord from the source credit
  • 1944Enacted · Pub. L. 102-515 · 106 Stat. 3372
  • 2000Amended · Pub. L. 106-310 · 114 Stat. 1115
  • 2002Amended · Pub. L. 107-260 · 116 Stat. 1743

A history note hasn’t been published yet. The record shows enactment by Pub. L. 102-515 on 1944-07-01.

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