[DOCID: f:hr379.110]
From the House Reports Online via GPO Access
[wais.access.gpo.gov]
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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