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[House Report 111-636]
[From the U.S. Government Publishing Office]

111th Congress                                                   Report
                        HOUSE OF REPRESENTATIVES
 2d Session                                                     111-636

======================================================================

 
     NATIONAL NEUROLOGICAL DISEASES SURVEILLANCE SYSTEM ACT OF 2010

                                _______
                                

 September 28, 2010.--Committed to the Committee of the Whole House on 
            the State of the Union and ordered to be printed

                                _______
                                

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

                              R E P O R T

                        [To accompany H.R. 1362]

      [Including cost estimate of the Congressional Budget Office]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 1362) to amend the Public Health Service Act to 
provide for the establishment of permanent national 
surveillance systems for multiple sclerosis, Parkinson's 
disease, and other neurological diseases and disorders, having 
considered the same, report favorably thereon with an amendment 
and recommend that the bill as amended do pass.

                                CONTENTS

                                                                   Page
Amendment........................................................     2
Purpose and Summary..............................................     3
Background and Need for Legislation..............................     3
Committee Consideration..........................................     4
Committee Votes..................................................     4
Committee Oversight Findings and Recommendations.................     4
New Budget Authority, Entitlement Authority, and Tax Expenditures     4
Statement of General Performance Goals and Objectives............     5
Constitutional Authority Statement...............................     5
Earmarks and Tax and Tariff Benefits.............................     5
Federal Advisory Committee Statement.............................     5
Applicability of Law to the Legislative Branch...................     5
Federal Mandates Statement.......................................     5
Committee Cost Estimate..........................................     5
Congressional Budget Office Cost Estimate........................     5
Section-by-Section Analysis of the Legislation...................     7
Explanation of Amendment.........................................     8
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 ``National Neurological Diseases 
Surveillance System Act of 2010''.

SEC. 2. NATIONAL NEUROLOGICAL DISEASES SURVEILLANCE SYSTEM.

  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. 399V-5 SURVEILLANCE OF NEUROLOGICAL DISEASES.

  ``(a) In General.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, shall--
          ``(1) enhance and expand infrastructure and activities to 
        track the epidemiology of neurological diseases, including 
        multiple sclerosis and Parkinson's disease; and
          ``(2) incorporate information obtained through such 
        activities into a statistically-sound, scientifically-credible, 
        integrated surveillance system, to be known as the National 
        Neurological Diseases Surveillance System.
  ``(b) Research.--The Secretary shall ensure that the National 
Neurological Diseases Surveillance System is designed in a manner that 
facilitates further research on neurological diseases.
  ``(c) Content.--In carrying out subsection (a), the Secretary--
          ``(1) shall provide for the collection and storage of 
        information on the incidence and prevalence of neurological 
        diseases in the United States;
          ``(2) to the extent practicable, shall provide for the 
        collection and storage of other available information on 
        neurological diseases, such as information concerning--
                  ``(A) demographics and other information associated 
                or possibly associated with neurological diseases, such 
                as age, race, ethnicity, sex, geographic location, and 
                family history;
                  ``(B) risk factors associated or possibly associated 
                with neurological diseases, including genetic and 
                environmental risk factors; and
                  ``(C) diagnosis and progression markers;
          ``(3) may provide for the collection and storage of 
        information relevant to analysis on neurological diseases, such 
        as information concerning--
                  ``(A) the epidemiology of the diseases;
                  ``(B) the natural history of the diseases;
                  ``(C) the prevention of the diseases;
                  ``(D) the detection, management, and treatment 
                approaches for the diseases; and
                  ``(E) the development of outcomes measures; and
          ``(4) may address issues identified during the consultation 
        process under subsection (d).
  ``(d) Consultation.--In carrying out this section, the Secretary 
shall consult with individuals with appropriate expertise, including--
          ``(1) epidemiologists with experience in disease surveillance 
        or registries;
          ``(2) representatives of national voluntary health 
        associations that--
                  ``(A) focus on neurological diseases, including 
                multiple sclerosis and Parkinson's disease; and
                  ``(B) have demonstrated experience in research, care, 
                or patient services;
          ``(3) health information technology experts or other 
        information management specialists;
          ``(4) clinicians with expertise in neurological diseases; and
          ``(5) research scientists with experience conducting 
        translational research or utilizing surveillance systems for 
        scientific research purposes.
  ``(e) Grants.--The Secretary may award grants to, or enter into 
contracts or cooperative agreements with, public or private nonprofit 
entities to carry out activities under this section.
  ``(f) Coordination With Other Federal Agencies.--Subject to 
subsection (h), the Secretary shall make information and analysis in 
the National Neurological Diseases Surveillance System available, as 
appropriate, to Federal departments and agencies, such as the National 
Institutes of Health, the Food and Drug Administration, the Centers for 
Medicare & Medicaid Services, the Agency for Healthcare Research and 
Quality, the Department of Veterans Affairs, and the Department of 
Defense.
  ``(g) Public Access.--Subject to subsection (h), the Secretary shall 
make information and analysis in the National Neurological Diseases 
Surveillance System available, as appropriate, to the public, including 
researchers.
  ``(h) Privacy.--The Secretary shall ensure that privacy and security 
protections applicable to the National Neurological Diseases 
Surveillance System are at least as stringent as the privacy and 
security protections under HIPAA privacy and security law (as defined 
in section 3009(a)(2)).
  ``(i) Report.--Not later than 4 years after the date of the enactment 
of this section, the Secretary shall submit a report to the Congress 
concerning the implementation of this section. Such report shall 
include information on--
          ``(1) the development and maintenance of the National 
        Neurological Diseases Surveillance System;
          ``(2) the type of information collected and stored in the 
        System;
          ``(3) the use and availability of such information, including 
        guidelines for such use; and
          ``(4) the use and coordination of databases that collect or 
        maintain information on neurological diseases.
  ``(j) Definition.--In this section, the term `national voluntary 
health association' means a national nonprofit organization with 
chapters, other affiliated organizations, or networks in States 
throughout the United States.
  ``(k) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $5,000,000 for each of fiscal 
years 2012 through 2016.''.

                          Purpose and Summary

    H.R. 1362, the ``National Neurological Diseases 
Surveillance System Act of 2010'', was introduced on March 5, 
2009, by Rep. Chris Van Hollen (D-MD), and referred to the 
Committee on Energy and Commerce.
    The goal of H.R. 1362 is to improve our understanding of 
Multiple Sclerosis (MS), Parkinson's disease, and other 
neurological diseases. The bill provides for systematic data 
collection, analysis, and interpretation (epidemiological 
surveillance) regarding these diseases.

                  Background and Need for Legislation

    Multiple Sclerosis affects an estimated 400,000 people in 
the United States.\1\ The exact cause of MS is unknown though 
it is thought to be an autoimmune disorder where the immune 
system incorrectly attacks healthy nerve fibers of the central 
nervous system (myelin).\2\ Symptoms range from blurriness and 
difficulty with coordination and balance to partial or complete 
paralysis. There is currently no cure for MS, though use of 
certain Food and Drug Administration-approved therapies can 
reduce the duration and severity of attacks among some 
patients. Parkinson's disease is diagnosed among an estimated 
60,000 people each year; however, the exact prevalence of this 
disease is unknown.\3\ Parkinson's disease results from the 
loss of dopamine-producing brain cells (or neurotransmitter 
cells).\4\ Parkinson's is also a chronic and progressive 
disease though symptoms vary from patient-to-patient, and like 
MS, there is no cure for Parkinson's, but treatments can 
provide relief from symptoms.
---------------------------------------------------------------------------
    \1\National Multiple Sclerosis Society, FAQs about MS (online at 
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-
about-ms/faqs-about-ms/index.aspx) (accessed Sept. 21, 2010).
    \2\National Institute of Neurological Disorders and Stroke, NINDS 
Multiple Sclerosis Information Page (online at http://
www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm) 
(accessed Sept. 21, 2010).
    \3\Parkinson's Action Network, About Parkinson's Disease (online at 
http://www.parkinsonsaction.org/parkinsons-disease/about-parkinsons-
disease) (accessed Sept. 21, 2010).
    \4\National Institute of Neurological Disorders and Stroke, NINDS 
Parkinson's Disease Information Page (online at http://
www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm) 
(accessed Sept. 21, 2010).
---------------------------------------------------------------------------
    The Centers for Disease Control and Prevention (CDC) does 
extensive monitoring of health and disease; however, with the 
exception of an amyotrophic lateral sclerosis (ALS) registry 
and tracking on causes of death, its surveillance efforts on 
MS, Parkinson's, and other neurological diseases to date have 
been limited. H.R. 1362 seeks to address the gaps in our 
understanding of MS, Parkinson's, and other neurological 
diseases through collection, analysis, and interpretation of 
data (epidemiological surveillance), including the incidence 
and prevalence of these diseases and the characteristics of 
people affected by them.

                        Committee Consideration

    H.R. 1362, the ``National Neurological Disease Surveillance 
System Act of 2010'', was introduced by Mr. Van Hollen of 
Maryland on March 5, 2009, and referred to the Committee on 
Energy and Commerce. The bill was subsequently referred to the 
Subcommittee on Health on March 6, 2009. On September 15, 2010, 
the Subcommittee held a legislative hearing on the bill. The 
Subcommittee met in open markup session to consider H.R. 1362 
on September 16, 2010. An amendment in the nature of a 
substitute by Mr. Burgess was adopted by a voice vote. 
Subsequently, H.R. 1362 was forwarded to the full Committee, 
amended, by a voice vote.
    On September 23, 2010, the Committee on Energy and Commerce 
met in open markup session and considered H.R. 1362 as approved 
by the Subcommittee. There were no amendments offered in full 
Committee and subsequently the Committee ordered H.R. 1362 
favorably reported to the House, as amended by the Subcommittee 
on Health, by a voice vote.

                            Committee Votes

    Clause 3(b) of rule XIII of the Rules of the House of 
Representatives requires the Committee to list each record vote 
on the motion to report legislation and amendments thereto. A 
motion by Mr. Pallone ordering H.R. 1362 reported to the House, 
as amended, was approved by a voice vote. There were no record 
votes taken during consideration of this bill.

            Committee Oversight Findings and Recommendations

    In compliance with clause 3(c)(1) of rule XIII and clause 
(2)(b)(1) of rule X of the Rules of the House of 
Representatives, the oversight findings and recommendations of 
the Committee are reflected in the descriptive portions of this 
report, including the finding that CDC surveillance of MS, 
Parkinson's disease, and certain neurological diseases has been 
limited.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    Regarding compliance with clause 3(c)(2) of rule XIII of 
the Rules of the House of Representatives, the Committee finds 
that H.R. 1362 would result in no new budget authority, 
entitlement authority, or tax expenditures or revenues.

         Statement of General Performance Goals and Objectives

    In accordance with clause 3(c)(4) of rule XIII of the Rules 
of the House of Representatives, the performance goals and 
objectives of the Committee are reflected in the descriptive 
portions of this report, including the goal of improving 
epidemiological surveillance regarding MS, Parkinson's, and 
other neurological diseases.

                   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 H.R. 1362 is provided under 
article I, section 8, clauses 3 and 18 of the Constitution of 
the United States.

                  Earmarks and Tax and Tariff Benefits

    H.R. 1362 does not contain any congressional earmarks, 
limited tax benefits, or limited tariff benefits as defined in 
clause 9 of rule XXI of the Rules of the House of 
Representatives.

                  Federal Advisory Committee Statement

    The Committee finds that the legislation does not establish 
or authorize the establishment of an advisory committee within 
the definition of 5 U.S.C. App., section 5(b) of the Federal 
Advisory Committee Act.

             Applicability of Law to the Legislative Branch

    Section 102(b)(3) of Public Law 104-1 requires a 
description of the application of this bill to the legislative 
branch where the bill relates to terms and conditions of 
employment or access to public services and accommodations. 
H.R. 1362 contains no such provisions.

                       Federal Mandates Statement

    Section 423 of the Congressional Budget and Impoundment 
Control Act of 1974 (as amended by section 101(a)(2) of the 
Unfunded Mandates Reform Act, Public Law 104-4) requires a 
statement on whether the provisions of the report include 
unfunded mandates. In compliance with this requirement the 
Committee adopts as its own the analysis of federal mandates 
prepared by the Director of the Congressional Budget Office 
regarding H.R. 1362.

                        Committee Cost Estimate

    Pursuant to clause 3(d)(2) of rule XIII of the Rules of the 
House of Representatives, the Committee adopts as its own the 
cost estimate of H.R. 1362 prepared by the Director of the 
Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974.

               Congressional Budget Office Cost Estimate

    With respect to the requirements of clause (3)(c)(3) of 
rule XIII of the Rules of the House of Representatives and 
section 402 of the Congressional Budget Act of 1974, the 
Committee has received the following cost estimate for H.R. 
1362 from the Director of Congressional Budget Office:

                                                September 24, 2010.
Hon. Henry A. Waxman,
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. 1362, the National 
Neurological Diseases Surveillance System Act of 2010.
    If you wish further details on this estimate, we will be 
pleased to provide them. The CBO staff contact is Lara 
Robillard.
            Sincerely,
                                              Douglas W. Elmendorf.
    Enclosure.

H.R. 1362--National Neurological Diseases Surveillance System Act of 
        2010

    Summary: H.R. 1362 would amend the Public Health Service 
Act to require the Secretary of Health and Human Services to 
increase epidemiological tracking of neurological diseases. It 
also would authorize the Secretary to create a surveillance 
system for neurological disorders. CBO estimates that 
implementing H.R. 1362 would cost $16 million over the 2011-
2015 period, assuming appropriation of the authorized amounts. 
Enacting H.R. 1362 would not affect direct spending or 
revenues; therefore, pay-as-you-go procedures do not apply.
    H.R. 1362 contains no intergovernmental or private-sector 
mandates as defined in the Unfunded Mandates Reform Act (UMRA).
    Estimated cost to the Federal Government: The estimated 
budgetary impact of H.R. 1362 is shown in the following table. 
The costs of this legislation fall within budget function 550 
(health).

------------------------------------------------------------------------
                                By fiscal year, in millions of dollars--
                              ------------------------------------------
                                                                   2011-
                                2011   2012   2013   2014   2015   2015
------------------------------------------------------------------------
              CHANGES IN SPENDING SUBJECT TO APPROPRIATION

Authorization Level..........      0      5      5      5      5      20
Estimated Outlays............      0      2      4      5      5      16
------------------------------------------------------------------------

    Basis of estimate: H.R. 1362 would direct the Secretary of 
Health and Human Services, acting through the Director of the 
Centers for Disease Control and Prevention (CDC), to expand 
tracking of the epidemiology of neurological diseases, such as 
multiple sclerosis and Parkinson's disease.
    The Secretary would use this information to create a 
National Neurological Diseases Surveillance System, which 
would, in part, facilitate additional research into 
neurological diseases. Among the data collected and analyzed 
through the new tracking and surveillance systems would be 
information on demographic characteristics, risk factors, and 
diagnoses. The Secretary would ensure coordination with other 
federal agencies and compliance with existing privacy laws.
    To implement the tracking and surveillance systems, the 
Secretary could award grants to, or enter into contracts or 
cooperative agreements with, public or not-for-profit entities. 
The bill would authorize the appropriation of $5 million a year 
for fiscal years 2012 through 2016 to implement those programs. 
Based on historical patterns of spending for grant programs 
administered by the CDC and assuming appropriation of the 
authorized amounts, CBO estimates that implementing the bill 
would cost $16 million over the 2012-2015 period and an 
additional $9 million after 2015.
    Pay-As-You-Go considerations: None.
    Intergovernmental and private-sector impact: H.R. 1362 
contains no intergovernmental or private-sector mandates as 
defined in UMRA. State and local governments that collect and 
store information concerning neurological diseases would 
benefit from grant funds authorized in the bill.
    Estimate prepared by: Federal costs: Lara Robillard; Impact 
on state, local, and tribal governments: Lisa Ramirez-Branum; 
Impact on the private sector: Jimmy Jin.
    Estimate approved by: Holly Harvey, Deputy Assistant 
Director for Budget Analysis.

             Section-by-Section Analysis of the Legislation

Section 1. Short title

    Section 1 designates that the short title may be cited as 
the ``National Neurological Diseases Surveillance System Act of 
2010''.

Section 2. National Neurological Diseases Surveillance System

    Section 2 amends part P of title III of the Public Health 
Service Act to create a new section (399V-5) that requires the 
Secretary of Health and Human Services, acting through the 
Director of the CDC, to: (1) enhance and expand infrastructure 
and activities to track neurological diseases, including MS and 
Parkinson's disease; and (2) incorporate information obtained 
through these efforts into a surveillance system.
    In so doing, the Secretary is required to: (1) ensure the 
surveillance system is designed in a manner that facilitates 
further research; (2) collect and store certain information 
(incidence and prevalence and, to the extent practicable, other 
available information); (3) consult with individuals with 
specified expertise; (4) make information and analysis in the 
surveillance system available to federal departments and 
agencies and the public, including researchers (as 
appropriate); and (5) ensure that privacy and security 
provisions applicable to the surveillance system are at least 
as stringent as required under the Health Insurance Portability 
and Accountability Act (HIPAA).
    Additionally, the Secretary is permitted to: (1) collect 
and store other information relevant to the analysis on 
neurological diseases; (2) address other issues identified 
through the required consultation process; and (3) award grants 
to, or enter into contracts with, public or private nonprofit 
entities to carry out the activities in the legislation.
    Section 2 requires the Secretary to report to Congress no 
later than four years after enactment of the legislation on its 
implementation. This section also authorizes $5 million for 
each of fiscal years 2012 through 2016 to carry out the 
activities in the legislation.
    The bill provides the Secretary with discretion in 
collecting and storing data on neurological diseases to: (1) 
allow for maximum efficiency in data collection efforts, and 
(2) permit a more integrated approach that can include 
surveillance of other neurological diseases and incorporate new 
information as it becomes available.
    H.R. 1362 requires the Secretary to collect and store other 
available information on neurological diseases (beyond 
incidence and prevalence) and provides two illustrative 
examples of this information--demographics and risk factors 
associated or possibly associated with these diseases. While 
currently-available information suggests a relationship or 
strong potential of a relationship between certain demographic 
variables and these diseases (e.g., age and MS), there may be 
other variables where a relationship may later be established 
(e.g., work history). With the proliferation of health 
information technology, and electronic health records in 
particular, the Committee expects additional information 
surrounding diagnosis and treatment of these diseases will 
become more readily available and facilitate opportunities for 
more in-depth surveillance of neurological and other diseases.
    The Committee intends for the requirement that the 
Secretary share information and analysis from this surveillance 
effort with other federal departments and agencies to be a 
first step in facilitating collaboration and information-
sharing to improve our understanding of these diseases, where 
appropriate and consistent with the privacy and security 
protections outlined in the legislation.
    In carrying out H.R. 1362, the Committee expects the 
Secretary to first focus on the collection and storage of data 
on MS and Parkinson's. Contingent upon annual appropriations 
and the availability of information on other diseases, the 
Committee encourages the Secretary to broaden surveillance 
efforts to also capture additional neurological diseases.

                        Explanation of Amendment

    During the Subcommittee on Health markup of H.R. 1362, Mr. 
Burgess of Texas offered an amendment in the nature of a 
substitute, which was adopted by a voice vote. The substance of 
the substitute amendment is reflected in the section-by-section 
analysis contained in this report.

         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. 399V-5. SURVEILLANCE OF NEUROLOGICAL DISEASES.

  (a) In General.--The Secretary, acting through the Director 
of the Centers for Disease Control and Prevention, shall--
          (1) enhance and expand infrastructure and activities 
        to track the epidemiology of neurological diseases, 
        including multiple sclerosis and Parkinson's disease; 
        and
          (2) incorporate information obtained through such 
        activities into a statistically-sound, scientifically-
        credible, integrated surveillance system, to be known 
        as the National Neurological Diseases Surveillance 
        System.
  (b) Research.--The Secretary shall ensure that the National 
Neurological Diseases Surveillance System is designed in a 
manner that facilitates further research on neurological 
diseases.
  (c) Content.--In carrying out subsection (a), the Secretary--
          (1) shall provide for the collection and storage of 
        information on the incidence and prevalence of 
        neurological diseases in the United States;
          (2) to the extent practicable, shall provide for the 
        collection and storage of other available information 
        on neurological diseases, such as information 
        concerning--
                  (A)   demographics and other information 
                associated or possibly associated with 
                neurological diseases, such as age, race, 
                ethnicity, sex, geographic location, and family 
                history;
                  (B) risk factors associated or possibly 
                associated with neurological diseases, 
                including genetic and environmental risk 
                factors; and
                  (C) diagnosis and progression markers;
          (3) may provide for the collection and storage of 
        information relevant to analysis on neurological 
        diseases, such as information concerning--
                  (A) the epidemiology of the diseases;
                  (B) the natural history of the diseases;
                  (C) the prevention of the diseases;
                  (D) the detection, management, and treatment 
                approaches for the diseases; and
                  (E) the development of outcomes measures; and
          (4) may address issues identified during the 
        consultation process under subsection (d).
  (d) Consultation.--In carrying out this section, the 
Secretary shall consult with individuals with appropriate 
expertise, including--
          (1) epidemiologists with experience in disease 
        surveillance or registries;
          (2) representatives of national voluntary health 
        associations that--
                  (A) focus on neurological diseases, including 
                multiple sclerosis and Parkinson's disease; and
                  (B) have demonstrated experience in research, 
                care, or patient services;
          (3) health information technology experts or other 
        information management specialists;
          (4) clinicians with expertise in neurological 
        diseases; and
          (5) research scientists with experience conducting 
        translational research or utilizing surveillance 
        systems for scientific research purposes.
  (e) Grants.--The Secretary may award grants to, or enter into 
contracts or cooperative agreements with, public or private 
nonprofit entities to carry out activities under this section.
  (f) Coordination With Other Federal Agencies.--Subject to 
subsection (h), the Secretary shall make information and 
analysis in the National Neurological Diseases Surveillance 
System available, as appropriate, to Federal departments and 
agencies, such as the National Institutes of Health, the Food 
and Drug Administration, the Centers for Medicare & Medicaid 
Services, the Agency for Healthcare Research and Quality, the 
Department of Veterans Affairs, and the Department of Defense.
  (g) Public Access.--Subject to subsection (h), the Secretary 
shall make information and analysis in the National 
Neurological Diseases Surveillance System available, as 
appropriate, to the public, including researchers.
  (h) Privacy.--The Secretary shall ensure that privacy and 
security protections applicable to the National Neurological 
Diseases Surveillance System are at least as stringent as the 
privacy and security protections under HIPAA privacy and 
security law (as defined in section 3009(a)(2)).
  (i) Report.--Not later than 4 years after the date of the 
enactment of this section, the Secretary shall submit a report 
to the Congress concerning the implementation of this section. 
Such report shall include information on--
          (1) the development and maintenance of the National 
        Neurological Diseases Surveillance System;
          (2) the type of information collected and stored in 
        the System;
          (3) the use and availability of such information, 
        including guidelines for such use; and
          (4) the use and coordination of databases that 
        collect or maintain information on neurological 
        diseases.
  (j) Definition.--In this section, the term ``national 
voluntary health association'' means a national nonprofit 
organization with chapters, other affiliated organizations, or 
networks in States throughout the United States.
  (k) Authorization of Appropriations.--To carry out this 
section, there is authorized to be appropriated $5,000,000 for 
each of fiscal years 2012 through 2016.

           *       *       *       *       *       *       *

                                  
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