S. 1382Senate110th Congress (2007-2009)Enacted

ALS Registry Act

Sponsored by Harry ReidSen. Harry Reid (D-NV)
Introduced May 14, 2007

Legislative Activity

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22 earlier actions
Became Law Latest Action

Became Public Law No: 110-373.

October 8, 2008

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SenateIntro Referral

Introduced in Senate

May 14, 2007

SenateIntro Referral

Sponsor introductory remarks on measure. (CR S6062)

May 14, 2007

SenateIntro Referral

Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR S6062-6063)

May 14, 2007

SenateCommittee

Committee on Health, Education, Labor, and Pensions. Ordered to be reported with an amendment in the nature of a substitute favorably.

November 14, 2007

SenateCommittee

Committee on Health, Education, Labor, and Pensions. Reported by Senator Kennedy with an amendment in the nature of a substitute. Without written report.

December 4, 2007

SenateCalendars

Placed on Senate Legislative Calendar under General Orders. Calendar No. 518.

December 4, 2007

SenateFloor

Measure laid before Senate by unanimous consent. (consideration: CR S9230-9232)

September 23, 2008

SenateFloor

Passed Senate with an amendment by Unanimous Consent. (text: CR S9230-9231)

September 23, 2008

HouseFloor

Received in the House.

September 24, 2008 • 10:03 AM

SenateFloor

Message on Senate action sent to the House.

September 24, 2008

HouseFloor

Held at the desk.

September 24, 2008 • 11:06 AM

HouseFloor

Mr. Pallone moved to suspend the rules and pass the bill.

September 25, 2008 • 4:29 PM

HouseFloor

Considered under suspension of the rules. (consideration: CR H9916-9917)

September 25, 2008 • 4:29 PM

HouseFloor

DEBATE - The House proceeded with forty minutes of debate on S. 1382.

September 25, 2008 • 4:30 PM

HouseFloor

At the conclusion of debate, the chair put the question on the motion to suspend the rules. Mr. Terry objected to the vote on the grounds that a quorum was not present. Further proceedings on the motion were postponed. The point of no quorum was withdrawn.

September 25, 2008 • 4:38 PM

HouseFloor

Considered as unfinished business. (consideration: CR H10042-10043)

September 26, 2008 • 11:55 AM

SenateFloor

Passed/agreed to in House: On motion to suspend the rules and pass the bill Agreed to by recorded vote (2/3 required): 415 - 2 (Roll no. 650).(text: CR 9/25/2008 H9916)

September 26, 2008 • 12:02 PM

HouseFloor

On motion to suspend the rules and pass the bill Agreed to by recorded vote (2/3 required): 415 - 2 (Roll no. 650). (text: CR 9/25/2008 H9916)

September 26, 2008 • 12:02 PM

HouseFloor

Motion to reconsider laid on the table Agreed to without objection.

September 26, 2008 • 12:02 PM

SenateAction

Cleared for White House.

September 26, 2008

President

Presented to President.

September 29, 2008

Became Law

Signed by President.

October 8, 2008

Became Law

Became Public Law No: 110-373.

October 8, 2008

Floor Debate

21 members

What members said about S. 1382 on the floor

9 Republicans12 Democrats
Tom Coburn
Sen. Tom CoburnR-OK · Jul 28, 2008

I thank the majority leader for the time. Mr. President, in the bills we did not agree to go to, I have worked with Senator Biden on the child exploitation alternative bill, which would protect our…

Richard J. Durbin
Sen. Richard J. DurbinD-IL · Jul 28, 2008

Mr. President, I would like to ask the Senator from Pennsylvania if he is seeking the floor to speak. Perhaps we can reach a time agreement and he can speak and I could speak as well. I would like to…

Harry Reid
Sen. Harry ReidD-NV · Jul 28, 2008

Mr. President, I ask unanimous consent to proceed to Calendar No. 898, S. 3335, the energy extenders package, and I ask that the clerk report the cloture motion at the desk. cloture motion Mr.…

Arlen Specter
Sen. Arlen SpecterR-PA · Jul 28, 2008

Objection. Will the Senator from Oklahoma yield to me? I have waited more than an hour to speak while the quorum call was on, and we couldn't get the quorum call taken off. With all due respect, the…

Dave Camp
Rep. Dave CampR-MI-4 · Sep 26, 2008

Madam Speaker, I yield myself such time as I may consume. (Mr. CAMP of Michigan asked and was given permission to revise and extend his remarks.) Madam Speaker, I rise today in opposition to H.R.…

Show 8 more
Arlen Specter
Sen. Arlen SpecterR-PA · Jul 31, 2008

Mr. President, I have sought recognition to discuss my vote on July 28 against cloture--to end debate--on the motion to proceed to S. 3297, the so-called Reid omnibus bill or ``Coburn package.'' As I…

Charles B. Rangel
Rep. Charles B. RangelD-NY-15 · Sep 26, 2008

Madam Speaker, pursuant to H. Res. 1503, I call up the bill (H.R. 7060) to amend the Internal Revenue Code of 1986 to provide incentives for energy production and conservation, to extend certain…

Richard E. Neal
Rep. Richard E. NealD-MA-2 · Sep 26, 2008

Madam Speaker, I yield myself such time as I might consume, and I want to thank Chairman Rangel. Let me stand in support of this energy and tax extenders legislation we are considering today. I have…

Tom Coburn
Sen. Tom CoburnR-OK · Sep 23, 2008

Answering the majority leader through the Chair, my staff has advised me a moment ago that we have come to agreement on that. I have no objection to the way that is written at this time. Madam…

Dianne Feinstein
Sen. Dianne FeinsteinD-CA · May 14, 2007

Mr. President, I rise today to introduce the U.S. Attorney Local Residency Restoration Act along with Senators Schumer, Baucus, and Tester. Simply put, this legislation would eliminate the other…

Lincoln Diaz-Balart
Rep. Lincoln Diaz-BalartR-FL-21 · Sep 25, 2008

Madam Speaker, I would like to thank my good friend, Mr. Cardoza, the gentleman from California, for the time; and I yield myself such time as I may consume. Madam Speaker, on the opening day of this…

Susan M. Collins
Sen. Susan M. CollinsR-ME · May 14, 2007

Mr. President, I rise to join with my senior colleague from Maine in sponsoring the Commercial Truck Highway Safety Demonstration Program Act, an important bill that addresses a significant safety…

Harry Reid
Sen. Harry ReidD-NV · May 14, 2007

Mr. President, I rise today for myself and Senator Ensign to introduce the Southern Nevada Limited Transition Area Act. This bill will allow one of Nevada's fastest growing communities to diversify…

Show 11 more
Mark Udall
Rep. Mark UdallD-CO-2 · Sep 26, 2008

Mr. Speaker, support this legislation that will extend critical tax credits for renewable energy and for American families while not adding to the Federal deficit. As co-chair of the Renewable Energy…

Jack Reed
Sen. Jack ReedD-RI · May 14, 2007

Mr. President, today I introduce the Homeownership Protection and Enhancement Act of 2007, HOPE Act. This legislation would reauthorize and amend Section 106 of the Housing and Urban Development Act…

Dennis A. Cardoza
Rep. Dennis A. CardozaD-CA-18 · Sep 25, 2008

Madam Speaker, by direction of the Committee on Rules, I call up House Resolution 1491 and ask for its immediate consideration. Madam Speaker, for the purpose of debate only, I yield the customary 30…

Greg Walden
Rep. Greg WaldenR-OR-2 · Sep 26, 2008

I want to thank my colleague from Michigan. Let me make a couple of points here. First of all, it's ironic that the argument by the Democrat majority on the floor today is one that says, you can't…

Jeff Bingaman
Sen. Jeff BingamanD-NM · May 14, 2007

Mr. President, I rise today to introduce legislation with my colleague from South Dakota, Senator Thune, designed to address the growing burden faced by this Nation's health care safety net…

Wally Herger
Rep. Wally HergerR-CA-2 · Sep 26, 2008

Madam Speaker, I rise in strong opposition to this phony tax extender bill. After months of negotiations, the Senate finally reached an agreement on extending critical tax relief for individuals,…

Olympia J. Snowe
Sen. Olympia J. SnoweR-ME · May 14, 2007

Mr. President, I rise today to join my colleague, Senator Collins, to introduce legislation that will rectify an impediment to international commerce flowing through Maine, but more importantly, will…

Daniel K. Akaka
Sen. Daniel K. AkakaD-HI · May 14, 2007

Mr. President, today I introduce legislation that would enhance and improve services for homeless veterans administered by the Department of Veterans Affairs. This bill addresses a number of areas…

Mitch McConnell
Sen. Mitch McConnellR-KY · Jul 28, 2008

Mr. President, without prolonging this discussion endlessly, I want to take a moment to congratulate my friend from Oklahoma for his courage in making an extraordinarily important point to our…

Bob Etheridge
Rep. Bob EtheridgeD-NC-2 · Sep 26, 2008

Mr. Speaker, I rise in support of H.R. 7060, Renewable Energy and Job Creation Tax Act. This legislation provides tax relief for millions of Americans while spurring business investment and…

Eliot L. Engel
Rep. Eliot L. EngelD-NY-17 · Sep 25, 2008

I thank my good friend, the gentleman from New Jersey (Mr. Pallone), with whom I have worked so closely during these past 20 years on so many things, and he is doing a wonderful job as chairman of…

Bill Text

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Enrolled BillIssued September 27, 2008

One Hundred Tenth Congress of the United States of America

2d Session

Begun and held at the City of Washington on Thursday, the third day of January, two thousand and eight

S. 1382

AN ACT

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

1.

Short title

This Act may be cited as the ALS Registry Act.

2.

Amendment to the Public Health Service Act

Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following:

399R.

Amyotrophic lateral sclerosis registry

(a)

Establishment

(1)

In general

Not later than 1 year after the receipt of the report described in subsection (b)(2)(A), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may, if scientifically advisable—

(A)

develop a system to collect data on amyotrophic lateral sclerosis (referred to in this section as ALS) and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS, including information with respect to the incidence and prevalence of the disease in the United States; and

(B)

establish a national registry for the collection and storage of such data to develop a population-based registry of cases in the United States of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.

(2)

Purpose

It is the purpose of the registry established under paragraph (1)(B) to—

(A)

better describe the incidence and prevalence of ALS in the United States;

(B)

examine appropriate factors, such as environmental and occupational, that may be associated with the disease;

(C)

better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease) associated with the disease;

(D)

better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS; and

(E)

other matters as recommended by the Advisory Committee established under subsection (b).

(b)

Advisory Committee

(1)

Establishment

Not later than 180 days after the date of the enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may establish a committee to be known as the Advisory Committee on the National ALS Registry (referred to in this section as the Advisory Committee). The Advisory Committee shall be composed of not more than 27 members to be appointed by the Secretary, acting through the Centers for Disease Control and Prevention, of which—

(A)

two-thirds of such members shall represent governmental agencies—

(i)

including at least one member representing—

(I)

the National Institutes of Health, to include, upon the recommendation of the Director of the National Institutes of Health, representatives from the National Institute of Neurological Disorders and Stroke and the National Institute of Environmental Health Sciences;

(II)

the Department of Veterans Affairs;

(III)

the Agency for Toxic Substances and Disease Registry; and

(IV)

the Centers for Disease Control and Prevention; and

(ii)

of which at least one such member shall be a clinician with expertise on ALS and related diseases, an epidemiologist with experience in data registries, a statistician, an ethicist, and a privacy expert (relating to the privacy regulations under the Health Insurance Portability and Accountability Act of 1996); and

(B)

one-third of such members shall be public members, including at least one member representing—

(i)

national and voluntary health associations;

(ii)

patients with ALS or their family members;

(iii)

clinicians with expertise on ALS and related diseases;

(iv)

epidemiologists with experience in data registries;

(v)

geneticists or experts in genetics who have experience with the genetics of ALS or other neurological diseases and

(vi)

other individuals with an interest in developing and maintaining the National ALS Registry.

(2)

Duties

The Advisory Committee may review information and make recommendations to the Secretary concerning—

(A)

the development and maintenance of the National ALS Registry;

(B)

the type of information to be collected and stored in the Registry;

(C)

the manner in which such data is to be collected;

(D)

the use and availability of such data including guidelines for such use; and

(E)

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.

(3)

Report

Not later than 270 days after the date on which the Advisory Committee is established, the Advisory Committee may submit a report to the Secretary concerning the review conducted under paragraph (2) that contains the recommendations of the Advisory Committee with respect to the results of such review.

(c)

Grants

The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may 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 that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS after receiving the report under subsection (b)(3).

(d)

Coordination With State, Local, and Federal Registries

(1)

In general

In establishing the National ALS Registry under subsection (a), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may—

(A)

identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other Federal public health and environmental infrastructure wherever possible, which may include—

(i)

any registry pilot projects previously supported by the Centers for Disease Control and Prevention;

(ii)

the Department of Veterans Affairs ALS Registry;

(iii)

the DNA and Cell Line Repository of the National Institute of Neurological Disorders and Stroke Human Genetics Resource Center at the National Institutes of Health;

(iv)

Agency for Toxic Substances and Disease Registry studies, including studies conducted in Illinois, Missouri, El Paso and San Antonio, Texas, and Massachusetts;

(v)

State-based ALS registries;

(vi)

the National Vital Statistics System; and

(vii)

any other existing or relevant databases that collect or maintain information on those motor neuron diseases recommended by the Advisory Committee established in subsection (b); and

(B)

provide for research access to ALS data as recommended by the Advisory Committee established in subsection (b) to the extent permitted by applicable statutes and regulations and in a manner that protects personal privacy consistent with applicable privacy statutes and regulations.

(C)

Coordination with nih and department of veterans affairs

Consistent with applicable privacy statutes and regulations, the Secretary may ensure that epidemiological and other types of information obtained under subsection (a) is made available to the National Institutes of Health and the Department of Veterans Affairs.

(e)

Definition

For the purposes of this section, the term national voluntary health association means a national non-profit organization with chapters or other affiliated organizations in States throughout the United States with experience serving the population of individuals with ALS and have demonstrated experience in ALS research, care, and patient services.

.

3.

Report on registries

Not later than 18 months after the date of enactment of this Act, the Secretary of Health and Human Services may submit to the appropriate committees of Congress a report outlining—

(1)

the registries currently under way;

(2)

future planned registries;

(3)

the criteria involved in determining what registries to conduct, defer, or suspend; and

(4)

the scope of those registries.

The report may also include a description of the activities the Secretary undertakes to establish partnerships with research and patient advocacy communities to expand registries.

Speaker of the House of Representatives

Vice President of the United States and President of the Senate