ALS Registry Act

Bill: 110-hr-2295
Sponsor: Rep. Engel, Eliot L. [D-NY-17]
Introduced: 2007-05-14 in the House
Policy area: Health
Subjects: 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 statistics
Nervous system diseases
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: 2007-10-16
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. 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.
 
Authorizes appropriations for FY2008-FY2012.


Legislative actions:
action_date: 2007-10-31
text: Read the second time. Placed on Senate Legislative Calendar under General Orders. Calendar No. 457.
action_date: 2007-10-30
text: Read the first time. Placed on Senate Legislative Calendar under Read the First Time.
action_date: 2007-10-17
text: Received in the Senate.
action_date: 2007-10-16
text: Motion to reconsider laid on the table Agreed to without objection.
action_date: 2007-10-16
text: On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 411 - 3 (Roll no. 970). (text: CR 10/15/2007 H11513-11514)
action_date: 2007-10-16
text: Passed/agreed to in House: On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 411 - 3 (Roll no. 970).(text: CR 10/15/2007 H11513-11514)
action_date: 2007-10-16
text: Considered as unfinished business. (consideration: CR H11586)
action_date: 2007-10-15
text: At the conclusion of debate, the Yeas and Nays were demanded and ordered. Pursuant to the provisions of clause 8, rule XX, the Chair announced that further proceedings on the motion would be postponed.
action_date: 2007-10-15
text: DEBATE - The House proceeded with forty minutes of debate on H.R. 2295.
action_date: 2007-10-15
text: Considered under suspension of the rules. (consideration: CR H11513-11516)
action_date: 2007-10-15
text: Ms. Baldwin moved to suspend the rules and pass the bill, as amended.
action_date: 2007-10-15
text: Placed on the Union Calendar, Calendar No. 236.
action_date: 2007-10-15
text: Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 110-379.
action_date: 2007-10-15
text: Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 110-379.
action_date: 2007-09-27
text: Ordered to be Reported (Amended) by Voice Vote.
action_date: 2007-09-27
text: Committee Consideration and Mark-up Session Held.
action_date: 2007-07-19
text: Forwarded by Subcommittee to Full Committee (Amended) by Voice Vote .
action_date: 2007-07-19
text: Subcommittee Consideration and Mark-up Session Held.
action_date: 2007-05-14
text: Referred to the Subcommittee on Health.
action_date: 2007-05-14
text: Referred to the House Committee on Energy and Commerce.
action_date: 2007-05-14
text: Sponsor introductory remarks on measure. (CR E1042)
action_date: 2007-05-14
text: Introduced in House
action_date: 2007-05-14
text: Introduced in House