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S 1353 109th Congress Senate Health 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

ALS Registry Act

Introduced: June 30, 2005 See on congress.gov
This bill died when the 109th Congress ended
It never became law before the 109th Congress (2005–2006) adjourned, and bills don't carry over to the next Congress. It would have to be reintroduced. You can still save it for reference, but it won't receive updates.
 Everywhere this bill has been 3 steps
Introduced
In committee
Reported out
Passed House
Passed Senate
To President
Became law
Jun 30, 2005
Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR 7/1/2005 S7836-7837)
Jun 30, 2005
Sponsor introductory remarks on measure. (CR 7/1/2005 S7836)
Jun 30, 2005
Introduced in Senate
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 Plain-English summary Congressional Research Service

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 (2) establish a national registry for the collection and storage of ALS data.

Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to study 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.

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 public access to an electronic national database that accepts data from state registries, health care professionals, and others 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.

What's happening now June 30, 2005

Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR 7/1/2005 S7836-7837)

 Related & companion bills 1
 Bill text 1 version

Source documents hosted by congress.gov.

 Committees of jurisdiction 1
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APA
U.S. Congress. (2026). S. 1353: ALS Registry Act. 109th Congress. Open America. https://openamerica.io/bill/109-S-1353/
MLA
"S. 1353: ALS Registry Act." 109th Congress, 2026, Open America, https://openamerica.io/bill/109-S-1353/.
Bluebook (legal)
S. 1353, 109th Cong. (2026), https://openamerica.io/bill/109-S-1353/.
Markdown link
[S. 1353: ALS Registry Act](https://openamerica.io/bill/109-S-1353/)
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