S. 1382 (110th): ALS Registry Act

Introduced:
May 14, 2007 (110th Congress, 2007–2009)
Sponsor:
Sen. Harry Reid [D-NV]
Status:
Signed by the President

The bill’s title was written by the bill’s sponsor. S. stands for Senate bill.

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Status

This bill was enacted after being signed by the President on October 8, 2008.

Progress
Introduced May 14, 2007
Referred to Committee May 14, 2007
Reported by Committee Nov 14, 2007
Passed Senate Sep 23, 2008
Passed House Sep 26, 2008
Signed by the President Oct 08, 2008
Votes

House Vote on Passage
Sep 26, 2008 12:02 p.m.
Passed 415/2

Cosponsors
77 cosponsors (41D, 34R, 2I) (show)
Committees

Senate Health, Education, Labor, and Pensions

The committee chair determines whether a bill will move past the committee stage.

Full Title

A bill to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry.

Summary

No summaries available.

Text

Read Bill Text »

Last updated Sep 27, 2008.
4 pages

Primary Source

View on THOMAS (The Library of Congress)

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Citation

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GovTrack’s Bill Summary

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Library of Congress Summary

The summary below was written by the Congressional Research Service, which is a nonpartisan division of the Library of Congress.

10/8/2008.
Section 2 -
Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), if scientifically advisable, to:
(1) develop a system to collect data on amyotrophic lateral sclerosis (ALS) and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, or progress to ALS; and
(2) establish a national registry for the collection and storage of such data to develop a population-based registry of cases.
Authorizes the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry, which may review information and make recommendations to the Secretary concerning:
(1) the development and maintenance of the registry;
(2) the type of information to be included;
(3) the manner in which data is to be collected;
(4) the use and availability of such data; and
(5) the collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS. Allows the Secretary, acting through the Director, to award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS and other motor neuron disorders.
Authorizes the Secretary, acting through the Director, to:
(1) identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and
(2) provide for research access to ALS data as recommended by the Advisory Committee in a manner that protects personal privacy.
Allows the Secretary to ensure that epidemiological and other types of information is made available to the National Institutes of Health (NIH) and the Department of Veterans Affairs (VA).
Section 3 -
Authorizes the Secretary to report to the appropriate congressional committees on ALS registries, including: (1) the registries currently under way and future planned registries; (2) the criteria involved in determining what registries to conduct, defer, or suspend; (3) the scope of those registries; and (4) the activities the Secretary undertakes to establish partnerships with research and patient advocacy communities to expand registries.

House Republican Conference Summary

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No summary available.

House Democratic Caucus Summary

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The bill contains the following citations to other parts of U.S. law:

United States Code

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