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HR 4033 109th Congress House

ALS Registry Act

Official title: To amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry.

Introduced: May 22, 2006 See on congress.gov
Health Data banksEconomics and Public FinanceEpidemiologyFederal advisory bodies
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Federal aid to health facilitiesGovernment Operations and PoliticsHealth information systemsHealth surveysMedical statisticsNervous system diseasesScience, Technology, Communications
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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 4 steps
Introduced
In committee
Reported out
Passed House
Passed Senate
To President
Became law
Oct 17, 2005
Referred to the Subcommittee on Health.
Oct 7, 2005
Referred to the House Committee on Energy and Commerce.
Oct 7, 2005
Sponsor introductory remarks on measure. (CR E2078)
Oct 7, 2005
Introduced in House
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 Latest action October 17, 2005

Referred to the Subcommittee on Health.

 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.

 Related & companion bills 1
  • S 1353 Identical bill ALS Registry Act
 Bill text 1 version

Source documents hosted by congress.gov.

 Committees of jurisdiction 2
 Cosponsors 65
All 65 Democratic 24 Republican 8 Independent 1
D
Sherman, Brad
California · Dec 8, 2006
 D
Kaptur, Marcy
Ohio · Nov 13, 2006
Bean, Melissa
· Sep 29, 2006
WATT, MELVIN
· Sep 29, 2006
Reichert, David
· Sep 19, 2006
POMEROY, EARL
· Sep 13, 2006
SPRATT, JOHN
· Sep 13, 2006
BROWN, HENRY
· Sep 6, 2006
 D
McCollum, Betty
Minnesota · Sep 6, 2006
 D
Smith, Adam
Washington · Sep 6, 2006
 R
Aderholt, Robert B.
Alabama · Jul 12, 2006
BERRY, MARION
· Jul 12, 2006
 D
Clyburn, James E.
South Carolina · Jun 22, 2006
LATOURETTE, STEVEN
· Jun 13, 2006
INSLEE, JAY
· Jun 8, 2006
MCKEON, HOWARD
· Jun 8, 2006
Miller, Brad
· Jun 8, 2006
 R
Capito, Shelley Moore
West Virginia · Jun 6, 2006
KANJORSKI, PAUL
· Jun 6, 2006
KENNEDY, PATRICK
· Jun 6, 2006
 R
Moran, Jerry
Kansas · Jun 6, 2006
 D
Costa, Jim
California · May 25, 2006
ETHERIDGE, BOB
· May 25, 2006
 R
Graves, Sam
Missouri · May 25, 2006
 D
Meeks, Gregory W.
New York · May 25, 2006
 R
Sessions, Pete
Texas · May 25, 2006
 D
Larsen, Rick
Washington · May 23, 2006
 D
Cuellar, Henry
Texas · May 22, 2006
EHLERS, VERNON
· May 22, 2006
EMERSON, JO
· May 22, 2006
JOHNSON, TIMOTHY
· May 22, 2006
 R
Lucas, Frank D.
Oklahoma · May 22, 2006
 D
Matsui, Doris O.
California · May 22, 2006
 D
Schakowsky, Janice D.
Illinois · May 22, 2006
SOUDER, MARK
· May 22, 2006
Sullivan, John
· May 22, 2006
Chandler, Ben
· May 18, 2006
COSTELLO, JERRY
· May 18, 2006
Davis, Artur
· May 18, 2006
HOEKSTRA, PETER
· May 18, 2006
 D
Nadler, Jerrold
New York · May 18, 2006
 D
Neal, Richard E.
Massachusetts · May 18, 2006
 R
Smith, Christopher H.
New Jersey · May 18, 2006
TAYLOR, GENE
· May 18, 2006
 D
Larson, John B.
Connecticut · May 11, 2006
CASTLE, MICHAEL
· Apr 6, 2006
 D
Markey, Edward J.
Massachusetts · Mar 28, 2006
Melancon, Charlie
· Mar 28, 2006
GALLEGLY, ELTON
· Mar 9, 2006
 D
McGovern, James P.
Massachusetts · Feb 14, 2006
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APA
U.S. Congress. (2026). H.R. 4033: ALS Registry Act. 109th Congress. Open America. https://openamerica.io/bill/109-HR-4033/
MLA
"H.R. 4033: ALS Registry Act." 109th Congress, 2026, Open America, https://openamerica.io/bill/109-HR-4033/.
Bluebook (legal)
H.R. 4033, 109th Cong. (2026), https://openamerica.io/bill/109-HR-4033/.
Markdown link
[H.R. 4033: ALS Registry Act](https://openamerica.io/bill/109-HR-4033/)
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