H.R. 2295House110th Congress (2007-2009)Passed House

ALS Registry Act

Introduced May 14, 2007

Legislative Activity

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20 earlier actions
SenateCalendars Latest Action

Read the second time. Placed on Senate Legislative Calendar under General Orders. Calendar No. 457.

October 31, 2007

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HouseIntro Referral

Introduced in House

May 14, 2007

HouseIntro Referral

Sponsor introductory remarks on measure. (CR E1042)

May 14, 2007

HouseIntro Referral

Referred to the House Committee on Energy and Commerce.

May 14, 2007

HouseCommittee

Referred to the Subcommittee on Health.

May 14, 2007

HouseCommittee

Subcommittee Consideration and Mark-up Session Held.

July 19, 2007

HouseCommittee

Forwarded by Subcommittee to Full Committee (Amended) by Voice Vote .

July 19, 2007

HouseCommittee

Committee Consideration and Mark-up Session Held.

September 27, 2007

HouseCommittee

Ordered to be Reported (Amended) by Voice Vote.

September 27, 2007

HouseCommittee

Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 110-379.

October 15, 2007

HouseCalendars

Placed on the Union Calendar, Calendar No. 236.

October 15, 2007

HouseFloor

Ms. Baldwin moved to suspend the rules and pass the bill, as amended.

October 15, 2007 • 4:16 PM

HouseFloor

Considered under suspension of the rules. (consideration: CR H11513-11516)

October 15, 2007 • 4:16 PM

HouseFloor

DEBATE - The House proceeded with forty minutes of debate on H.R. 2295.

October 15, 2007 • 4:16 PM

HouseFloor

At the conclusion of debate, the Yeas and Nays were demanded and ordered. Pursuant to the provisions of clause 8, rule XX, the Chair announced that further proceedings on the motion would be postponed.

October 15, 2007 • 4:29 PM

HouseFloor

Considered as unfinished business. (consideration: CR H11586)

October 16, 2007 • 3:20 PM

HouseFloor

Passed/agreed to in House: On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 411 - 3 (Roll no. 970).(text: CR 10/15/2007 H11513-11514)

October 16, 2007 • 3:28 PM

HouseFloor

On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 411 - 3 (Roll no. 970). (text: CR 10/15/2007 H11513-11514)

October 16, 2007 • 3:28 PM

HouseFloor

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

October 16, 2007 • 3:28 PM

SenateIntro Referral

Received in the Senate.

October 17, 2007

SenateCalendars

Read the first time. Placed on Senate Legislative Calendar under Read the First Time.

October 30, 2007

SenateCalendars

Read the second time. Placed on Senate Legislative Calendar under General Orders. Calendar No. 457.

October 31, 2007

Floor Debate

23 members

What members said about H.R. 2295 on the floor

6 Republicans17 Democrats
Tom Davis
Rep. Tom DavisR-VA-11 · Oct 16, 2007

Mr. Speaker, I yield myself such time as I may consume. I rise today to speak on H. Res. 734, a resolution about corruption in Iraq. Corruption, the theft of public resources for private gain, saps…

Harry Reid
Sen. Harry ReidD-NV · Dec 12, 2007

Mr. President, the Senate will be in a period of morning business for 3 hours this morning. The reason for the inordinate amount of time is that--I will make a presentation in a little bit to get…

Henry A. Waxman
Rep. Henry A. WaxmanD-CA-30 · Oct 16, 2007

Mr. Speaker, pursuant to H. Res. 741, I call up the resolution (H. Res. 734) expressing the sense of the House of Representatives regarding the withholding of information relating to corruption in…

Sheila Jackson Lee
Rep. Sheila Jackson LeeD-TX-18 · Oct 16, 2007

Mr. Speaker, I rise today in strong support of H. Res. 734, expressing the sense of House of Representatives regarding the withholding of information relating to corruption in Iraq, introduced by my…

John F. Tierney
Rep. John F. TierneyD-MA-6 · Oct 16, 2007

Mr. Speaker, the fundamental issue before us on this resolution is whether or not this institution, the Congress, is going to absolutely carry out its oversight responsibilities and demand that the…

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Joe Baca
Rep. Joe BacaD-CA-43 · Jul 30, 2008

Mr. Speaker, I rise in support of H. Res. 896, the Primary Lateral Sclerosis Awareness Month Act. I would like to thank Chairman Dingell, Chairman Pallone, Ranking Member Nathan Deal, along with Mr.…

Darrell Issa
Rep. Darrell IssaR-CA-49 · Oct 16, 2007

Mr. Speaker, I ask that his words be taken down for disparagement of the Bush administration. Mr. Speaker, I have no objection as long as the admonishment of the Chair would be that, in fact, there…

Stephen F. Lynch
Rep. Stephen F. LynchD-MA-9 · Oct 16, 2007

Mr. Speaker, I want to thank the gentleman from California for yielding. Mr. Speaker, I think it is important that the American people understand what exactly is going on here. This is not about the…

Chris Van Hollen
Rep. Chris Van HollenD-MD-8 · Oct 16, 2007

Mr. Speaker, I thank my colleague, the chairman of the committee (Mr. Waxman) for his important work in this area and moving the committee to take a look at this. Look, the question is why does the…

Eliot L. Engel
Rep. Eliot L. EngelD-NY-17 · Oct 15, 2007

Madam Speaker, I thank the gentlewoman from Wisconsin for yielding to me. Madam Speaker, I wish to thank you for bringing up the ALS Registry Act of 2007 for a vote, H.R. 2295. This is truly a…

Vito Fossella
Rep. Vito FossellaR-NY-13 · Oct 15, 2007

Madam Speaker, I yield myself such time as I may consume. Madam Speaker, I would also like to thank Congressman Engel and Congressman Terry for their efforts in the establishment of the ALS Registry…

Dan Burton
Rep. Dan BurtonR-IN-5 · Oct 16, 2007

Thank you, Mr. Davis, for yielding the time. You know, I get such a kick out of my colleagues on the other side of the aisle, in particular the chairman of the committee. He was my ranking Democrat…

Lee Terry
Rep. Lee TerryR-NE-2 · Oct 15, 2007

Madam Speaker, I rise today in strong support of The ALS Registry Act of 2007, originally introduced in May by my colleague Representative Eliot Engel of New York and myself. As the bill comes to the…

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Christopher Murphy
Rep. Christopher MurphyD-CT-5 · Oct 16, 2007

I thank the chairman. Mr. Speaker, I think it is important to say it today that the conversation about corruption in Iraq, this isn't theoretical. It is not hypothetical. It is not just about numbers…

Duncan Hunter
Rep. Duncan HunterR-CA-52 · Oct 16, 2007

I thank the gentleman for yielding. Mr. Speaker, I rise to oppose this resolution. Let me just speak to the point that is made by the resolution that talks about the need to disclose in open session…

John A. Yarmuth
Rep. John A. YarmuthD-KY-3 · Oct 16, 2007

Mr. Speaker, last week Lieutenant General Ricardo Sanchez, who led our forces in Iraq when the vast majority of the American public had yet to turn against the war, emphatically agreed with those of…

Lee Terry
Rep. Lee TerryR-NE-2 · Jul 30, 2008

Mr. Speaker, I too rise in support of House Resolution 896, recognizing February of 2009 as Primary Lateral Sclerosis Awareness Month. I also wish to thank Mr. Baca for authoring this resolution.…

Frank Pallone, Jr.
Rep. Frank Pallone, Jr.D-NJ-6 · Jul 30, 2008

Mr. Speaker, I move to suspend the rules and agree to the resolution (H. Res. 896) recognizing the need to pursue research into the causes, a treatment, and an eventual cure for primary lateral…

Tammy Baldwin
Rep. Tammy BaldwinD-WI-2 · Oct 15, 2007

Madam Speaker, I move to suspend the rules and pass the bill (H.R. 2295) to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry, as…

Elijah E. Cummings
Rep. Elijah E. CummingsD-MD-7 · Oct 16, 2007

Thank you very much, Chairman Waxman, for yielding. Mr. Speaker, I rise in support of H. Res. 734, a resolution expressing our dismay at the withholding of information relating to Iraqi corruption,…

Patrick J. Murphy
Rep. Patrick J. MurphyD-PA-8 · Oct 15, 2007

Madam Speaker, I rise today in support of H.R. 2295, to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry. ALS, more commonly known as…

Stephanie Herseth Sandlin
Rep. Stephanie Herseth SandlinD-SD · Oct 15, 2007

Madam Speaker, I rise in support of H.R. 2295, the ALS Registry Act, introduced by the gentleman from New York (Mr. Engel). I would like to thank my friend and colleague from Wisconsin (Ms. Baldwin)…

Barbara Lee
Rep. Barbara LeeD-CA-9 · Oct 16, 2007

Mr. Speaker, let me thank the gentleman for yielding and also for his leadership as Chair of the committee for insisting that Congress exercise its constitutional responsibility of oversight of the…

Dennis J. Kucinich
Rep. Dennis J. KucinichD-OH-10 · Oct 16, 2007

Mr. Speaker, I rise in support of the resolution. One must put this debate in perspective. The administration certainly helped to create the war. Iraq didn't have weapons of mass destruction, but…

Bill Text

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Latest
Placed on Calendar SenateIssued October 31, 2007

II

Calendar No. 457

110th CONGRESS

1st Session

H. R. 2295

IN THE SENATE OF THE UNITED STATES

October 17, 2007

Received

October 30, 2007

Read the first time

October 31, 2007

Read the second time and placed on the calendar

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.

Findings

Congress makes the following findings:

(1)

Amyotrophic lateral sclerosis (referred to in this section as ALS) is a fatal, progressive neurodegenerative disease that affects motor nerve cells in the brain and the spinal cord.

(2)

The average life expectancy for a person with ALS is 2 to 5 years from the time of diagnosis.

(3)

The cause of ALS is not well understood.

(4)

There is only one drug currently approved by the Food and Drug Administration for the treatment of ALS, which has thus far shown only modest effects, prolonging life by just a few months.

(5)

There is no known cure for ALS.

(6)

More than 5,000 individuals in the United States are diagnosed with ALS annually and as many as 30,000 individuals may be living with ALS in the United States today.

(7)

Studies have found relationships between ALS and environmental and genetic factors, but those relationships are not well understood.

(8)

Scientists believe that there are significant ties between ALS and other motor neuron diseases.

(9)

Several ALS disease registries and databases exist in the United States and throughout the world, including the SOD1 database, the National Institute of Neurological Disorders and Stroke repository, and the Department of Veterans Affairs ALS Registry.

(10)

A single national system to collect and store information on the prevalence and incidence of ALS in the United States does not exist.

(11)

In each of fiscal years 2006 and 2007, Congress directed $887,000 to the Centers for Disease Control and Prevention to begin a nationwide ALS registry.

(12)

The Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry have established three pilot projects, beginning in fiscal year 2006, to evaluate the science to guide the creation of a national ALS registry.

(13)

The establishment of a national registry will help—

(A)

to identify the incidence and prevalence of ALS in the United States;

(B)

to collect data important to the study of ALS;

(C)

to promote a better understanding of ALS;

(D)

to collect information that is important for research into the genetic and environmental factors that cause ALS;

(E)

to strengthen the ability of a clearinghouse—

(i)

to collect and disseminate research findings on environmental, genetic, and other causes of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS;

(ii)

to make available information to patients about research studies for which they may be eligible; and

(iii)

to maintain information about clinical specialists and clinical trials on therapies; and

(F)

to enhance efforts to find treatments and a cure for ALS.

3.

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)(3), the Secretary, acting through the Director of the Centers for Disease Control and Prevention and in consultation with a national voluntary health organization with experience serving the population of individuals with amyotrophic lateral sclerosis (referred to in this section as ALS), shall—

(A)

develop a system to collect data on 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 include 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 gather available data concerning—

(A)

ALS, including the incidence and prevalence of ALS in the United States;

(B)

the environmental and occupational factors that may be associated with the disease;

(C)

the age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease;

(D)

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 90 days after the date of the enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall 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 at least one member, to be appointed by the Secretary, acting through the Director of the Centers for Disease Control and Prevention, representing each of the following:

(A)

National voluntary health associations that focus solely on ALS and have demonstrated experience in ALS research, care, and patient services, as well as other voluntary associations focusing on neurodegenerative diseases that represent and advocate on behalf of patients with ALS and patients with other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.

(B)

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.

(C)

The Department of Veterans Affairs.

(D)

The Agency for Toxic Substances and Disease Registry.

(E)

The Centers for Disease Control and Prevention.

(F)

Patients with ALS or their family members.

(G)

Clinicians with expertise on ALS and related diseases.

(H)

Epidemiologists with experience in data registries.

(I)

Geneticists or experts in genetics who have experience with the genetics of ALS or other neurological diseases.

(J)

Statisticians.

(K)

Ethicists.

(L)

Attorneys.

(M)

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

(2)

Duties

The Advisory Committee shall 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 1 year after the date on which the Advisory Committee is established, the Advisory Committee shall submit a report 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

Notwithstanding the recommendations of the Advisory Committee under subsection (b), 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.

(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, shall—

(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, including—

(i)

the 3 ALS registry pilot projects initiated in fiscal year 2006 by the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry at the South Carolina Office of Research & Statistics; the Mayo Clinic in Rochester, Minnesota; and Emory University in Atlanta, Georgia;

(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;

(iv)

the 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, including the Massachusetts ALS Registry;

(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.

(2)

Coordination with nih and department of veterans affairs

Notwithstanding the recommendations of the Advisory Committee established in subsection (b), and consistent with applicable privacy statutes and regulations, the Secretary shall 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.

(f)

Authorization of Appropriations

There are authorized to be appropriated to carry out this section, $25,000,000 for fiscal year 2008, and $16,000,000 for each of the fiscal years 2009 through 2012.

.

Passed the House of Representatives October 16, 2007.

Lorraine C. Miller,

Clerk.

October 31, 2007

Read the second time and placed on the calendar