Skip to content
PoliticalRepoPoliticalRepo

United States · Bill · HR

H.R. 4033 (109th)

ALS Registry Act

referredUnited States· United States Congress· EN

Introduced

7 October 2005

Last action

17 October 2005 · Referred

Status

Referred to the Subcommittee on Health.

Sponsors

Rep. Engel, Eliot L. [D-NY-16], Rep. Terry, Lee [R-NE-2], Rep. Shimkus, John [R-IL-15], Rep. Waxman, Henry A. [D-CA-33], Rep. Whitfield, Ed [R-KY-1], Sen. Brown, Sherrod [D-OH], Rep. Eshoo, Anna G. [D-CA-18], Rep. Towns, Edolphus [D-NY-10], Rep. Rush, Bobby L. [D-IL-1], Rep. Capps, Lois [D-CA-24], Rep. Allen, Thomas H. [D-ME-1], Rep. Rangel, Charles B. [D-NY-15], Rep. Foley, Mark [R-FL-16], Rep. McNulty, Michael R. [D-NY-23], Rep. McHugh, John M. [R-NY-23], Rep. Ros-Lehtinen, Ileana [R-FL-27], Rep. McDermott, Jim [D-WA-7], Rep. DeLauro, Rosa L. [D-CT-3], Rep. Shays, Christopher [R-CT-4], Rep. Jefferson, William J. [D-LA-2], Rep. Goode, Virgil H., Jr. [R-VA-5], Rep. Lantos, Tom [D-CA-12], Rep. Berkley, Shelley [D-NV-1], Rep. Calvert, Ken [R-CA-41], Del. Bordallo, Madeleine Z. [D-GU-At Large], ROBERT BRADY, Rep. Moore, Dennis [D-KS-3], Rep. Jackson Lee, Sheila [D-TX-18], Rep. Abercrombie, Neil [D-HI-1], Rep. Carson, Julia [D-IN-7], Rep. Crowley, Joseph [D-NY-14], Rep. Filner, Bob [D-CA-51], Rep. Grijalva, Raúl M. [D-AZ-7], Rep. Higgins, Brian [D-NY-26], Rep. Hinchey, Maurice D. [D-NY-22], Rep. Kucinich, Dennis J. [D-OH-10], Rep. Lynch, Stephen F. [D-MA-8], Rep. Ruppersberger, C. A. Dutch [D-MD-2], Sen. Sanders, Bernard [I-VT], Sen. Schiff, Adam B. [D-CA], David Scott, Sen. Van Hollen, Chris [D-MD], Rep. Wasserman Schultz, Debbie [D-FL-25], Rep. Weiner, Anthony D. [D-NY-9], Rep. Wexler, Robert [D-FL-19], Rep. Capuano, Michael E. [D-MA-8], Rep. Owens, Major R. [D-NY-11], Rep. McCarthy, Carolyn [D-NY-4]

Subjects

Healthcare, Environment, Transport

Source updated

5 December 2025

Healthcare · Environment · Transport

Official sourceDownload fileView documentsShare

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 (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.

This text is taken from the official record. PoliticalRepo does not editorialize.

Timeline

  1. 7 October 2005

    Introduced

    Referred to the House Committee on Energy and Commerce.

    Source: IntroReferral

  2. 7 October 2005

    Introduced

    Sponsor introductory remarks on measure. (CR E2078)

    Source: IntroReferral

  3. 7 October 2005

    Introduced

    Introduced in House

    Source: IntroReferral

  4. 7 October 2005

    Introduced

    Introduced in House

    Source: IntroReferral

  5. 17 October 2005

    Referred

    Referred to the Subcommittee on Health.

    Source: Committee

Votes

No vote records are attached yet.

Versions

Documents

3 official files

Introduced in House (text)

View fileDownload file

This file cannot be previewed here. Use View or Download.

Leesvertaling

Vertaal dit document naar jouw taal. PoliticalRepo bewaart geen aparte kopie per EU-taal.

Documentvertaling op verzoek met downloadbare PDF (logo + link naar de officiële bron). Het bronbestand blijft leidend.

  • Introduced in House (text)

    Introduced in House · EN · 7 October 2005

    ViewDownloadOpen at official source

  • Introduced in House (PDF)

    Introduced in House · EN · 7 October 2005

    ViewDownloadOpen at official source

    Leesvertaling

    Vertaal dit document naar jouw taal. PoliticalRepo bewaart geen aparte kopie per EU-taal.

    Documentvertaling op verzoek met downloadbare PDF (logo + link naar de officiële bron). Het bronbestand blijft leidend.

  • Introduced in House

    summary · EN · 7 October 2005

    Open at official source

    Leesvertaling

    Vertaal dit document naar jouw taal. PoliticalRepo bewaart geen aparte kopie per EU-taal.

    Documentvertaling op verzoek met downloadbare PDF (logo + link naar de officiële bron). Het bronbestand blijft leidend.

Sponsors

Showing 48 of 217 sponsors and actors.

Related records

Sources

PoliticalRepo is an index and interpretation layer, not the authoritative legal source.