[House Report 110-379]
[From the U.S. Government Publishing Office]



110th Congress                                                   Report
                        HOUSE OF REPRESENTATIVES
 1st Session                                                    110-379

======================================================================
 
                            ALS REGISTRY ACT

                                _______
                                

October 15, 2007.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

 Mr. Dingell, from the Committee on Energy and Commerce, submitted the 
                               following

                              R E P O R T

                        [To accompany H.R. 2295]

      [Including cost estimate of the Congressional Budget Office]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 2295) to amend the Public Health Service Act to 
provide for the establishment of an Amyotrophic Lateral 
Sclerosis Registry, having considered the same, report 
favorably thereon with an amendment and recommend that the bill 
as amended do pass.

                                CONTENTS

                                                                   Page
Amendment........................................................     1
Purpose and Summary..............................................     4
Background and Need for Legislation..............................     4
Hearings.........................................................     5
Committee Consideration..........................................     5
Committee Votes..................................................     5
Committee Oversight Findings.....................................     5
Statement of General Performance Goals and Objectives............     5
New Budget Authority, Entitlement Authority, and Tax Expenditures     5
Earmarks and Tax and Tariff Benefits.............................     6
Committee Cost Estimate..........................................     6
Congressional Budget Office Estimate.............................     6
Federal Mandates Statement.......................................     7
Advisory Committee Statement.....................................     7
Constitutional Authority Statement...............................     7
Applicability to Legislative Branch..............................     7
Section-by-Section Analysis of the Legislation...................     7
Changes in Existing Law Made by the Bill, as Reported............     8

                               Amendment

    The amendment is as follows:
    Strike all after the enacting clause and insert the 
following:

SECTION 1. SHORT TITLE.

  This Act may be cited as the ``ALS Registry Act''.

SEC. 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.

SEC. 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:

``SEC. 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.''.

                          Purpose and Summary

    The purpose of H.R. 2295, the ALS Registry Act, is to 
provide for the creation and maintenance of a single nationwide 
Amyotrophic Lateral Sclerosis (ALS) Registry at the Centers for 
Disease Control and Prevention (CDC). The registry would 
collect key data and information as determined by a newly 
created Federal Advisory Committee on the National ALS 
Registry.

                  Background and Need for Legislation

    Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's 
disease, is a fatal, progressive neurodegenerative disease that 
affects motor nerve cells in the brain and spinal cord. 
Approximately 5,600 people in the U.S. are diagnosed with ALS 
each year, and it is estimated that as many as 30,000 Americans 
have the disease at any given time. The average life expectancy 
for a person with ALS is two to five years from the time of 
diagnosis. The causes of ALS are not well understood, and there 
is no known cure.
    In fiscal year 2006, Congress directed nearly $1 million to 
CDC to begin a National ALS Registry. This funding has enabled 
the Centers for Disease Control and Prevention's Agency for 
Toxic Substances and Disease Registry to launch three 
registrypilot projects, which are evaluating the science to guide the 
creation of a National ALS Registry.
    A single national patient registry that collects and stores 
information on the prevalence and incidence of ALS does not 
exist in the United States today. The establishment of a 
national registry will help identify the incidence and 
prevalence of ALS and other related motor neuron disorders in 
the United States as well as the etiology of the diseases. The 
patient registry would collect data that is urgently needed for 
ALS research, disease management, and the development of 
standards of care in order to significantly enhance the 
Nation's efforts to find a treatment and cure for ALS and other 
related motor neuron disorders.

                                Hearings

    The Committee on Energy and Commerce has not held hearings 
on the legislation.

                        Committee Consideration

    On Thursday, July 19, 2007, the Subcommittee on Health met 
in open markup session and ordered H.R. 2295 favorably 
forwarded to the full Committee, amended, by a voice vote. On 
Thursday, September 27, 2007, the full Committee met in open 
markup session and ordered H.R. 2295 favorably reported to the 
House, as amended by the Subcommittee, by a voice vote. No 
amendments were offered during full Committee consideration.

                            Committee Votes

    Clause 3(b) of rule XIII of the Rules of the House of 
Representatives requires the Committee to list the record votes 
on the motion to report legislation and amendments thereto. 
There were no recorded votes taken during consideration or in 
ordering reported H.R. 2295 to the House. A motion by Mr. 
Dingell to order H.R. 2295 favorably reported to the House, as 
amended, was agreed to by a voice vote.

                      Committee Oversight Findings

    Regarding clause 3(c)(1) of rule XIII of the Rules of the 
House of Representatives, the oversight findings of the 
Committee are reflected in this report.

         Statement of General Performance Goals and Objectives

    H.R. 2295 would require the Secretary of Health and Human 
Services, acting through the Director of CDC, (1) to develop a 
system to collect data on ALS and other motor neuron disorders 
that can be confused with ALS, misdiagnosed as ALS, or progress 
to ALS; and (2) to establish a national registry for the 
collection and storage of such data.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    In compliance with clause 3(c)(2) of rule XIII of the Rules 
of the House of Representatives, the Committee finds that H.R. 
2295 would result in no new or increased budget authority, 
entitlement authority, or tax expenditures.

                  Earmarks and Tax and Tariff Benefits

    In compliance with clause 9 of rule XXI of the Rules of the 
House of Representatives, H.R. 2295 does not contain any 
congressional earmarks, limited tax benefits, or limited tariff 
benefits as defined in clause 9(d), 9(e), or 9(f) of rule XXI.

                        Committee Cost Estimate

    The Committee adopts as its own the cost estimate prepared 
by the Director of the Congressional Budget Office pursuant to 
section 402 of the Congressional Budget Act of 1974.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII of the Rules of the 
House of Representatives, the following is the cost estimate 
provided by the Congressional Budget Office pursuant to section 
402 of the Congressional Budget Act of 1974:

                                                   October 4, 2007.
Hon. John D. Dingell,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
    Dear Mr. Chairman: The Congressional Budget Office has 
prepared the enclosed cost estimate for H.R. 2295, the ALS 
Registry Act.
    If you wish further details on this estimate, we will be 
pleased to provide them. The CBO staff contact is Tim 
Gronniger.
    Sincerely,
                                                   Peter R. Orszag.
    Enclosure.

H.R. 2295--ALS Registry Act

    H.R. 2295 would modify the Public Health Service Act to 
authorize funding for the establishment of a national registry 
for the collection and storage of data on amyotrophic lateral 
sclerosis (ALS). It would authorize the appropriation of $25 
million for 2008 and $16 million a year over the 2009-2012 
period for the Centers for Disease Control and Prevention for 
those activities. Based on historical patterns of spending for 
similar activities, CBO estimates that implementing H.R. 2295 
would cost $10 million in 2008 and $75 million over the 2008-
2012 period, assuming appropriation of the authorized amounts. 
Enacting the bill would not affect direct spending or revenues.
    H.R. 2295 contains no intergovernmental or private-sector 
mandates as defined in the Unfunded Mandates Reform Act. Grants 
and other activities authorized in the bill to collect, 
analyze, and report data on ALS would benefit state and local 
governments.
    The estimated budgetary impact of H.R. 2295 is shown in the 
following table. The costs of this legislation fall within 
budget function 550 (health).

----------------------------------------------------------------------------------------------------------------
                                                                     By Fiscal Year, in Millions of Dollars
                                                               -------------------------------------------------
                                                                  2008      2009      2010      2011      2012
----------------------------------------------------------------------------------------------------------------
                                  CHANGES IN SPENDING SUBJECT TO APPROPRIATION

Authorization Level...........................................        25        16        16        16        16
Estimated Outlays.............................................        10        17        16        16        16
----------------------------------------------------------------------------------------------------------------

    The CBO staff contact for this estimate is Tim Gronniger. 
This estimate was approved by Keith J. Fontenot, Deputy 
Assistant Director for Health and Human Resources, Budget 
Analysis Division.

                       Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act.

                      Advisory Committee Statement

    Regarding section 5(b) of the Federal Advisory Committee 
Act, H.R. 2295 requires the Secretary of Health and Human 
Services, acting through CDC, to establish an advisory 
committee regarding the national ALS registry that would be 
established pursuant to the bill. The Committee finds that 
establishing the advisory committee is the most efficient way 
of carrying out the policies involved.

                   Constitutional Authority Statement

    Pursuant to clause 3(d)(1) of rule XIII of the Rules of the 
House of Representatives, the Committee finds that the 
constitutional authority for this legislation is provided in 
the provisions of Article I, section 8, clause 1, that relate 
to expending funds to provide for the general welfare of the 
United States.

                  Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

             Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 establishes the short title of the Act as the 
``ALS Registry Act''.

Section 2. Findings

    Section 2 sets out the findings of the Act.

Section 3. Amendment to the Public Health Service Act

    Section 3 amends the Public Health Service Act by adding a 
new Section to require the Secretary of Health and Human 
Services, acting through the Director of CDC, to: (1) develop a 
system to collect data on ALS and other motor neuron disorders 
that can be confused with ALS, misdiagnosed as ALS, or progress 
to ALS; and (2) establish a national registry for the 
collection and storage of such data.
    It requires the Secretary, acting through the Director of 
CDC, to establish the Advisory Committee on the National ALS 
Registry to review information 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 of CDC, 
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 and other 
motor neuron disorders.
    Requires the Secretary, acting through the Director of CDC, 
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 research 
access to ALS data as recommended by the Advisory Committee in 
a manner that protects personal privacy.
    The term ``national voluntary health association'' is 
defined.
    Authorizes 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.

         Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (new matter is 
printed in italic and existing law in which no change is 
proposed is shown in roman):

PUBLIC HEALTH SERVICE ACT

           *       *       *       *       *       *       *


TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE

           *       *       *       *       *       *       *


PART P--ADDITIONAL PROGRAMS

           *       *       *       *       *       *       *


SEC. 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.

           *       *       *       *       *       *       *


                                  
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