ALS Registry Act
Latest action · 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)
Progress
Where this bill reached, and when. A stage with no date was not reached; one that failed a vote and later carried shows the date it carried.
- IntroducedJun 30, 2005
- Passed SenateNot reached
- Passed HouseNot reached
- To the PresidentNot reached
- Became lawNot reached
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.
Cosponsors 50
Members who signed on, in the order they did. Signatures ran from Jun 30, 2005 to Nov 13, 2006; 8 are original cosponsors, there from the day it was introduced.
| Seat | Cosponsor | Signed on | |
|---|---|---|---|
| R-LA | David Vitter | Original | Jun 30, 2005 |
| D-MI | Debbie Stabenow | Original | Jun 30, 2005 |
| D-NM | Jeff Bingaman | Original | Jun 30, 2005 |
| R-VA | John Warner | Original | Jun 30, 2005 |
| D-NJ | Jon S. Corzine | Original | Jun 30, 2005 |
| R-AK | Lisa Murkowski | Original | Jun 30, 2005 |
| D-IL | Richard J. Durbin | Original | Jun 30, 2005 |
| R-MS | Thad Cochran | Original | Jun 30, 2005 |
| R-OR | Gordon H. Smith | Jul 11, 2005 | |
| D-LA | Mary L. Landrieu | Jul 14, 2005 | |
| D-NJ | Frank R. Lautenberg | Jul 18, 2005 | |
| D-NE | Ben Nelson | Jul 28, 2005 | |
| D-CA | Barbara Boxer | Oct 17, 2005 | |
| D-IN | Evan Bayh | Oct 19, 2005 | |
| D-FL | Bill Nelson | Oct 24, 2005 | |
| D-MN | Mark Dayton | Dec 12, 2005 | |
| D-CT | Christopher J. Dodd | Jan 25, 2006 | |
| D-WA | Patty Murray | May 15, 2006 | |
| D-HI | Daniel K. Akaka | May 17, 2006 | |
| R-ID | Larry E. Craig | May 17, 2006 | |
| D-HI | Daniel K. Inouye | May 18, 2006 | |
| D-NJ | Robert Menendez | May 18, 2006 | |
| R-VA | George Allen | May 22, 2006 | |
| R-FL | Mel Martinez | May 22, 2006 | |
| R-NC | Richard Burr | May 22, 2006 | |
| R-MT | Conrad R. Burns | May 23, 2006 | |
| R-MN | Norm Coleman | May 23, 2006 | |
| D-CA | Dianne Feinstein | May 25, 2006 | |
| R-SC | Lindsey Graham | May 25, 2006 | |
| R-OH | Mike DeWine | May 25, 2006 | |
| D-ND | Byron L. Dorgan | Jun 7, 2006 | |
| R-KY | Jim Bunning | Jun 7, 2006 | |
| I-CT | Joseph I. Lieberman | Jun 7, 2006 | |
| D-MA | Edward M. Kennedy | Jun 8, 2006 | |
| R-NC | Elizabeth Dole | Jun 12, 2006 | |
| R-AL | Jeff Sessions | Jun 15, 2006 | |
| D-ND | Kent Conrad | Jun 16, 2006 | |
| D-AR | Blanche L. Lincoln | Jun 23, 2006 | |
| R-PA | Rick Santorum | Jun 27, 2006 | |
| D-DE | Thomas R. Carper | Jun 28, 2006 | |
| D-AR | Mark L. Pryor | Jun 29, 2006 | |
| R-SC | Jim DeMint | Jul 13, 2006 | |
| D-NY | Charles E. Schumer | Sep 5, 2006 | |
| D-NY | Hillary Rodham Clinton | Sep 5, 2006 | |
| D-MT | Max Baucus | Sep 5, 2006 | |
| D-MA | John F. Kerry | Sep 26, 2006 | |
| R-MO | Jim Talent | Sep 29, 2006 | |
| D-OR | Ron Wyden | Sep 29, 2006 | |
| D-MI | Carl Levin | Nov 13, 2006 | |
| R-ME | Susan M. Collins | Nov 13, 2006 |
Committees 1
Where it was sent and what each committee and subcommittee did with it, in order.
| Chamber | Committee | What it did |
|---|---|---|
| Senate | Health, Education, Labor, and Pensions Committee | Referred Jun 30, 2005 |
Actions 3
Everything that happened, newest first.
- Jun 30, 2005Introduced in Senate
- Jun 30, 2005Sponsor introductory remarks on measure. (CR 7/1/2005 S7836)
- Jun 30, 2005Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR 7/1/2005 S7836-7837)
In the Congressional Record 1
Days the Record’s own index lists this bill, newest first, with the pages and the members it names. Pages starting H are the House, S the Senate, E Extensions of Remarks.
| Where | In the Record | Members | Date |
|---|---|---|---|
| Senate | Debate and remarks S7836Text printed S7836 | Harry Reid D-NV (text) | Jun 30, 2005 |
Related bills 1
Companion bills and other measures the record links to this one.
| Bill | Title | Relationship | Latest action |
|---|---|---|---|
| HR 4033 | ALS Registry Act | Identical bill | Oct 17, 2005 |
Titles 2
Every title it has carried, official and short, at each stage.
- Official Title as Introduced
- A bill to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry.
- Short Titles as Introduced
- ALS Registry Act
Subjects
Assigned by the Library of Congress. Policy area: Health.
Text 1
Each version as it was printed, newest first.
- Jun 30, 2005Introduced in Senate
Everything here is as published by Congress: the summary is the Congressional Research Service's, the action wording is the clerks', and the subjects are the Library of Congress's. How far it got is read from the actions themselves, taking the most recent one of each kind, so a bill that failed a vote and later passed is shown as having passed. Records come from this bill on Congress.gov and govinfo.gov; cost estimates are the Congressional Budget Office's, and the hearings are the printed hearings GovInfo publishes, which can appear months after the hearing.