ALS Registry Act

Bill: 110-s-1382
Sponsor: Sen. Reid, Harry [D-NV]
Introduced: 2007-05-14 in the Senate
Policy area: Health
Subjects: Civil Rights and Liberties, Minority Issues
Congress
Congressional reporting requirements
Data banks
Economics and Public Finance
Epidemiology
Federal advisory bodies
Federal aid to health facilities
Government Operations and Politics
Health information systems
Health surveys
Medical records
Medical statistics
Nervous system diseases
Right of privacy
Science, Technology, Communications

Summary:
action_date: 2007-05-14
text: 
ALS Registry Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), 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.
 
Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to 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.
 
Requires 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.
 
Requires 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.

action_date: 2007-12-04
text: 
ALS Registry Act - (Sec. 2) Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), 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.
 
Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to 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. Sets forth reporting requirements.
 
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.
 
Requires 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.
 
Requires 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).
 
Authorizes appropriations for FY2008-FY2012.
 
(Sec. 3) Requires 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.

action_date: 2008-10-08
text: 
ALS Registry Act - (Sec. 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).
 
(Sec. 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.


Legislative actions:
action_date: 2008-10-08
text: Became Public Law No: 110-373.
action_date: 2008-10-08
text: Became Public Law No: 110-373.
action_date: 2008-10-08
text: Signed by President.
action_date: 2008-10-08
text: Signed by President.
action_date: 2008-09-29
text: Presented to President.
action_date: 2008-09-29
text: Presented to President.
action_date: 2008-09-26
text: Cleared for White House.
action_date: 2008-09-26
text: Motion to reconsider laid on the table Agreed to without objection.
action_date: 2008-09-26
text: On motion to suspend the rules and pass the bill Agreed to by recorded vote (2/3 required): 415 - 2 (Roll no. 650). (text: CR 9/25/2008 H9916)
action_date: 2008-09-26
text: Passed/agreed to in House: On motion to suspend the rules and pass the bill Agreed to by recorded vote (2/3 required): 415 - 2 (Roll no. 650).(text: CR 9/25/2008 H9916)
action_date: 2008-09-26
text: Considered as unfinished business. (consideration: CR H10042-10043)
action_date: 2008-09-25
text: At the conclusion of debate, the chair put the question on the motion to suspend the rules. Mr. Terry objected to the vote on the grounds that a quorum was not present. Further proceedings on the motion were postponed. The point of no quorum was withdrawn.
action_date: 2008-09-25
text: DEBATE - The House proceeded with forty minutes of debate on S. 1382.
action_date: 2008-09-25
text: Considered under suspension of the rules. (consideration: CR H9916-9917)
action_date: 2008-09-25
text: Mr. Pallone moved to suspend the rules and pass the bill.
action_date: 2008-09-24
text: Held at the desk.
action_date: 2008-09-24
text: Message on Senate action sent to the House.
action_date: 2008-09-24
text: Received in the House.
action_date: 2008-09-23
text: Passed Senate with an amendment by Unanimous Consent. (text: CR S9230-9231)
action_date: 2008-09-23
text: Passed/agreed to in Senate: Passed Senate with an amendment by Unanimous Consent.(text: CR S9230-9231)
action_date: 2008-09-23
text: Measure laid before Senate by unanimous consent. (consideration: CR S9230-9232)
action_date: 2007-12-04
text: Placed on Senate Legislative Calendar under General Orders. Calendar No. 518.
action_date: 2007-12-04
text: Committee on Health, Education, Labor, and Pensions. Reported by Senator Kennedy with an amendment in the nature of a substitute. Without written report.
action_date: 2007-12-04
text: Committee on Health, Education, Labor, and Pensions. Reported by Senator Kennedy with an amendment in the nature of a substitute. Without written report.
action_date: 2007-11-14
text: Committee on Health, Education, Labor, and Pensions. Ordered to be reported with an amendment in the nature of a substitute favorably.
action_date: 2007-05-14
text: Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR S6062-6063)
action_date: 2007-05-14
text: Sponsor introductory remarks on measure. (CR S6062)
action_date: 2007-05-14
text: Introduced in Senate

Enacted as: number: 110-373