H.R.2295 - ALS Registry Act

To amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry. view all titles (4)

All Bill Titles

  • Short: ALS Registry Act as passed house.
  • Short: ALS Registry Act as introduced.
  • Official: To amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry. as introduced.
  • Short: ALS Registry Act as reported to house.

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Introduced
 
House
Passed
 
Senate
Passes
 
President
Signs
 

 
05/14/07
 
10/16/07
 
 
 
 
 

Sponsor

Representative

Eliot Engel

D-NY

View Co-Sponsors (276)
 

Latest Vote

Result: Passed - October 16, 2007

Roll call number 970 in the House

Question: On Motion to Suspend the Rules and Pass, as Amended: H R 2295 ALS Registry Act

 

Official Summary

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

Official Summary

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.

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