ALS Registry Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to: (1) develop a system to collect data on amyotrophic lateral sclerosis (ALS); and (2) establish a national registry for the collection and storage of ALS data.
Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to study and make recommendations to the Secretary concerning: (1) the development and maintenance of the registry; (2) the type of information to be included; (3) the manner in which data is to be collected; (4) the use and availability of such data; and (5) the collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS.
Allows the Secretary, acting through the Director, to award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS.
Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for public access to an electronic national database that accepts data from state registries, health care professionals, and others as recommended by the Advisory Committee in a manner that protects personal privacy.
Requires the Secretary to ensure that epidemiological and other types of information is made available to the National Institutes of Health (NIH) and the Department of Veterans Affairs.
[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4033 Introduced in House (IH)]
109th CONGRESS
1st Session
H. R. 4033
To amend the Public Health Service Act to provide for the establishment
of an Amyotrophic Lateral Sclerosis Registry.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
October 7, 2005
Mr. Engel (for himself, Mr. Terry, Mr. Shimkus, Mr. Waxman, Mr.
Whitfield, Mr. Brown of Ohio, Ms. Eshoo, Mr. Towns, Mr. Rush, Mrs.
Capps, Mr. Allen, Mr. Rangel, Mr. Foley, Mr. McNulty, Mr. McHugh, Ms.
Ros-Lehtinen, Mr. McDermott, Ms. DeLauro, Mr. Shays, Mr. Jefferson, Mr.
Goode, Mr. Lantos, Ms. Berkley, Mr. Calvert, Ms. Bordallo, Mr. Brady of
Pennsylvania, Mr. Moore of Kansas, Ms. Jackson-Lee of Texas, Mr.
Abercrombie, Ms. Carson, Mr. Crowley, Mr. Filner, Mr. Grijalva, Mr.
Higgins, Mr. Hinchey, Mr. Kucinich, Mr. Lynch, Mr. Ruppersberger, Mr.
Sanders, Mr. Schiff, Mr. Scott of Georgia, Mr. Van Hollen, Ms.
Wasserman Schultz, Mr. Weiner, Mr. Wexler, Mr. Capuano, and Mr. Owens)
introduced the following bill; which was referred to the Committee on
Energy and Commerce
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to provide for the establishment
of an Amyotrophic Lateral Sclerosis Registry.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
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 any 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) The establishment of a national registry will help--
(A) identify the incidence and prevalence of ALS in
the United States;
(B) collect data important to the study of ALS;
(C) promote a better understanding of ALS;
(D) promote research into the genetic and
environmental factors that cause ALS;
(E) provide a means for patients to contact
scientists researching the environmental and genetic
factors that cause ALS as well as those engaged in
clinical trials; and
(F) 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. 399O. AMYOTROPHIC LATERAL SCLEROSIS REGISTRY.
``(a) Establishment.--
``(1) In general.--Not later than 6 months 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 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,
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 of ALS in the United
States.
``(2) Purpose.--It is the purpose of the registry
established under paragraph (1)(B) to--
``(A) gather data concerning--
``(i) ALS, including the incidence and
prevalence of ALS in the United States;
``(ii) the environmental and occupational
factors that may be associated with the
disease;
``(iii) the age, race or ethnicity, gender,
and family history of individuals who are
diagnosed with the disease; and
``(iv) other matters as recommended by the
Advisory Committee established under subsection
(b); and
``(B) establish a secure method to put patients in
contact with scientists studying the environmental, and
genetic causes of motor neuron disease or conducting
clinical trials on therapies for motor neuron disease.
``(b) Advisory Committee.--
``(1) Establishment.--Not later than 60 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 that have a demonstrated experience
in ALS research, care, and patient services.
``(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 who have worked with data
registries.
``(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 conduct a study
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 6 months after the date on
which the Advisory Committee is established, the Advisory
Committee shall submit a report concerning the study conducted
under paragraph (2) that contains the recommendations of the
Advisory Committee with respect to the results of such study.
``(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.
``(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 Department of Veterans Affairs
ALS Registry;
``(ii) the DNA and Cell Line Repository of
the National Institute of Neurological
Disorders and Stroke Human Genetics Resource
Center;
``(iii) Agency for Toxic Substances and
Disease Registry studies, including studies
conducted in Illinois, Missouri, El Paso and
San Antonio Texas, and Massachusetts;
``(iv) State-based ALS registries,
including the Massachusetts ALS Registry;
``(v) the National Vital Statistics System;
and
``(vi) 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 public access to an electronic
national database that accepts data from State-based
registries, health care professionals, and others as
recommended by the Advisory Committee established in
subsection (b) in a manner that protects personal
privacy consistent with medical privacy regulations.
``(2) Coordination with nih and department of veterans
affairs.--Notwithstanding the recommendations of the Advisory
Committee established in subsection (b), 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
2006, and such sums as may be necessary for each of fiscal years 2007
through 2010.''.
<all>
Introduced in House
Introduced in House
Sponsor introductory remarks on measure. (CR E2078)
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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