S 792 ISCommentsClose CommentsPermalink

To amend the Public Health Service Act to improve the National Program of Cancer Registries by expanding data collection and allowing data sharing for public health objectives, while preserving the confidentiality of patients, and for other purposes.CommentsClose CommentsPermalink

April 2, 2009CommentsClose CommentsPermalink

Mr. SANDERS introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and PensionsCommentsClose CommentsPermalink

To amend the Public Health Service Act to improve the National Program of Cancer Registries by expanding data collection and allowing data sharing for public health objectives, while preserving the confidentiality of patients, and for other purposes.CommentsClose CommentsPermalink

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,CommentsClose CommentsPermalink

SECTION 1. SHORT TITLE.

This Act may be cited as the ‘Improvement of the National Program of Cancer Registries Act’.CommentsClose CommentsPermalink

SEC. 2. FINDINGS AND PURPOSE.

(a) Findings- Congress finds as follows:CommentsClose CommentsPermalink





(1) The National Program of Cancer Registries, established in 1992 by the Cancer Registries Amendment Act (Public Law 102-515; 106 Stat. 3372), has enabled each of the 50 States to maintain a functioning cancer registry.CommentsClose CommentsPermalink





(2) Over the past 15 years, the Centers for Disease Control and Prevention has enhanced central cancer registries and helped to establish standards for quality and completeness of such registries.CommentsClose CommentsPermalink





(3) The statewide, population-based cancer registries collect information on cancer incidence and mortality rates, which may be used for identifying cancer patterns and trends and for directing cancer control interventions.CommentsClose CommentsPermalink





(4) The States rely on electronic records, especially electronic laboratory records, for the majority of data collection for the cancer registries.CommentsClose CommentsPermalink





(5) The States do not have adequate resources to access all of the records of physicians, hospitals, outpatient clinics, nursing homes, and other agencies providing services to cancer patients that would assist in identifying characteristics of each patient and treatment of the cancer.CommentsClose CommentsPermalink





(6) Laboratories do not systematically collect or record essential data, including information on the occupation, socioeconomic status, or treatments of, or environmental factors affecting, cancer patients, and thus cancer registries, which depend in part upon records of laboratories, do not have essential data that would help determine causes or contributory causes of cancers.CommentsClose CommentsPermalink





(7) The National Program of Cancer Registries has established standards for collecting information but has not established standards that allow data exchange with other disease registries.CommentsClose CommentsPermalink





(8) Information collected by cancer registries must be exchanged with other disease registries in a confidential and secure manner in order to prevent information about patients from being used for purposes other than medical treatment, medical research, or public health.CommentsClose CommentsPermalink





(b) Purpose- The purpose of this Act is to improve the National Program of Cancer Registries by expanding the data elements collected, enhancing the quality of information collected, and collecting data such that the National Program of Cancer Registries preserves the confidentiality of patients while allowing data sharing for public health objectives.CommentsClose CommentsPermalink

SEC. 3. AMENDMENTS TO THE NATIONAL PROGRAM OF CANCER REGISTRIES.

(a) Enhancing Data Collection- Section 399B(a)(1) of title III of the Public Health Service Act (42 U.S.C. 280e(a)(1)) is amended--CommentsClose CommentsPermalink





(1) in the matter preceding subparagraph (A), by striking ‘registries to collect, for each condition specified in paragraph (2)(A), data concerning’, and inserting ‘cancer registries in order to collect, for each form of in-situ and invasive cancer (with the exception of basal cell and squamous cell carcinoma of the skin), data in a standardized manner concerning’;CommentsClose CommentsPermalink





(2) by striking subparagraph (B) and inserting the following:CommentsClose CommentsPermalink





‘(B) information on the industrial or occupational history of adult individuals with the cancers, using the Federal Standard Occupational Classification system;’;CommentsClose CommentsPermalink





(3) in subparagraph (D), by striking ‘and’ after the semicolon;CommentsClose CommentsPermalink





(4) by inserting after subparagraph (D) the following:CommentsClose CommentsPermalink





‘(E) the highest level of education attained by adult individuals with the cancers;CommentsClose CommentsPermalink





‘(F) sources of payment by individuals with cancer for costs associated with cancer diagnosis and treatment;CommentsClose CommentsPermalink





‘(G) history of alcohol and tobacco use by individuals with cancer; and’; andCommentsClose CommentsPermalink





(5) by redesignating subparagraph (E) as subparagraph (H).CommentsClose CommentsPermalink





(b) Establishing Data Collection Standards- Section 399B of title III of the Public Health Service Act (42 U.S.C. 280e) is amended by inserting at the end the following:CommentsClose CommentsPermalink





‘(f) Data Collection Standards-CommentsClose CommentsPermalink





‘(1) IN GENERAL- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall--CommentsClose CommentsPermalink





‘(A) develop standards for collection of each data element for the State cancer registries assisted under this section;CommentsClose CommentsPermalink





‘(B) develop inter-operability and security standards for data exchange and integration between--CommentsClose CommentsPermalink





‘(i) the cancer registries of 2 or more States; andCommentsClose CommentsPermalink





‘(ii) any cancer registry and another Federal registry for non-cancer diseases that contains data concerning individual patients; andCommentsClose CommentsPermalink





‘(C) provide a basic electronic collection tool, to facilitate standardized data collection, available to each State to use for cancer registries.CommentsClose CommentsPermalink





‘(2) ASSURANCES- Each applicant, prior to receiving Federal funds under the Improvement of the National Program of Cancer Registries Act, shall provide assurances satisfactory to the Secretary that the applicant will comply with standards developed under paragraph (1).CommentsClose CommentsPermalink





‘(3) COORDINATION WITH OTHER FEDERAL PROGRAMS- To promote the greatest possible efficiency and effectiveness in the collection of data for federally-supported cancer registries, the Secretary shall facilitate appropriate coordination of the National Program of Cancer Registries under this part with other federally-supported registry programs, including infectious disease registries, environmental disease registries, and other non-cancer, chronic disease registries.’.CommentsClose CommentsPermalink

SEC. 4. AUTHORIZATION.

To carry out this Act, there are authorized to be appropriated $100,000,000 for each of the fiscal years 2010, 2011, 2012, and 2013.CommentsClose CommentsPermalink