[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5874 Introduced in House (IH)]







110th CONGRESS
  2d Session
                                H. R. 5874

To amend the Public Health Service Act to provide for the establishment 
    of a permanent Multiple Sclerosis National Surveillance System.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             April 22, 2008

  Mr. Burgess (for himself and Mr. Carnahan) 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 a permanent Multiple Sclerosis National Surveillance System.

    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 ``National MS Disease Registry Act''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Multiple sclerosis (referred to in this section as 
        ``MS'') is a progressive, disabling disease that affects the 
        brain and the spinal cord causing loss of myelin, damage to 
        axons, and cerebral atrophy.
            (2) MS is a prime-of-life disease with an average age of 
        onset at 30 to 35 years of age.
            (3) The causes of MS are not well understood.
            (4) There is no known cure for MS.
            (5) There are several drugs currently approved by the Food 
        and Drug Administration for the treatment of MS, which have 
        shown modest success in reducing relapses, slowing progression 
        of disability, and limiting the accumulation of brain lesions.
            (6) More than 10,000 individuals in the United States are 
        diagnosed with MS annually, and it is thought that more than 
        400,000 individuals in the United States have MS.
            (7) Studies have found relationships between MS and 
        environmental and genetic factors, but those relationships are 
        not well understood.
            (8) Several small and uncoordinated MS registries and 
        databases exist in the United States and throughout the world.
            (9) A single national system to collect and store 
        information on the incidence and prevalence of MS in the United 
        States does not exist.
            (10) The Agency for Toxic Substances and Disease Registry 
        has established a series of small pilot studies, beginning in 
        fiscal year 2006, to evaluate the feasibility of various 
        methodologies that might be used to create a MS surveillance 
        system at the national level.
            (11) The establishment of a national surveillance system 
        will help--
                    (A) to identify the incidence and prevalence of MS 
                in the United States;
                    (B) to collect data important to the study of MS;
                    (C) to produce epidemiologically sound data that 
                can be used to compare with MS cluster information, 
                data sets of the Department of Veterans Affairs data 
                sets, and other information;
                    (D) to promote a better understanding of MS;
                    (E) to better understand public and private 
                resource impact;
                    (F) to collect information that is important for 
                research into genetic and environmental risk factors 
                for MS;
                    (G) to enhance biomedical and clinical research by 
                providing a basis for population comparisons; and
                    (H) to enhance efforts to find treatments and a 
                cure for MS.

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. MULTIPLE SCLEROSIS NATIONAL SURVEILLANCE SYSTEM.

    ``(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 Agency for Toxic Substances 
        and Disease Registry and in consultation with a national 
        voluntary health organization with experience serving the 
        population of individuals with multiple sclerosis (referred to 
        in this section as `MS'), shall--
                    ``(A) develop a system to collect data on MS 
                including information with respect to the incidence and 
                prevalence of the disease in the United States; and
                    ``(B) establish a national surveillance system for 
                the collection and storage of such data to include a 
                population-based registry of cases of MS in the United 
                States.
            ``(2) Purpose.--It is the purpose of the registry 
        established under paragraph (1)(B) to gather available data 
        concerning--
                    ``(A) MS, including the incidence and prevalence of 
                MS in the United States;
                    ``(B) the age, race or ethnicity, gender, and 
                family history of individuals who are diagnosed with 
                the disease; and
                    ``(C) other matters as recommended by the Advisory 
                Committee established pursuant to subsection (b).
    ``(b) Advisory Committee.--
            ``(1) Establishment.--Not later than 180 days after the 
        date of the enactment of this section, the Secretary, acting 
        through the Director of the Agency for Toxic Substances and 
        Disease Registry shall establish a committee to be known as the 
        Advisory Committee on the MS National Surveillance System 
        (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 Agency for Toxic Substances and Disease Registry, 
        representing each of the following:
                    ``(A) National voluntary health associations that 
                focus solely on MS and have demonstrated experience in 
                MS research, care, or 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, the National Institute of Environmental Health 
                Sciences, and the National Institute of Allergy and 
                Infectious Diseases.
                    ``(C) The Department of Veterans Affairs.
                    ``(D) The Department of Defense.
                    ``(E) The Agency for Toxic Substances and Disease 
                Registry.
                    ``(F) The Centers for Disease Control and 
                Prevention.
                    ``(G) Patients with MS or their family members.
                    ``(H) Clinicians with expertise on MS and related 
                diseases.
                    ``(I) Epidemiologists with experience in data 
                registries.
                    ``(J) Geneticists or experts in genetics who have 
                experience with the genetics of MS.
                    ``(K) Statisticians.
                    ``(L) Ethicists.
                    ``(M) Attorneys.
                    ``(N) Other individuals, organizations, or agencies 
                with an interest in developing and maintaining the MS 
                National Surveillance System.
            ``(2) Duties.--The Advisory Committee shall review 
        information and make recommendations to the Secretary 
        concerning--
                    ``(A) the development and maintenance of the MS 
                National Surveillance System;
                    ``(B) the type of information to be collected and 
                stored in the System;
                    ``(C) the manner in which such data is to be 
                collected; and
                    ``(D) the use and availability of such data 
                including guidelines for such use.
            ``(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 Agency for Toxic Substances and Disease Registry, 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 MS.
    ``(d) Coordination With State, Local, and Federal Registries.--
            ``(1) In general.--In establishing the MS National 
        Surveillance System under subsection (a), the Secretary, acting 
        through the Director of the Agency for Toxic Substances and 
        Disease Registry, shall--
                    ``(A) identify, build upon, expand, and coordinate 
                existing data and surveillance systems, surveys, 
                registries, and other Federal public health and 
                environmental infrastructure wherever possible, 
                including--
                            ``(i) the 2 MS surveillance pilot studies 
                        initiated in fiscal year 2006 by the Centers 
                        for Disease Control and Prevention and the 
                        Agency for Toxic Substances and Disease 
                        Registry;
                            ``(ii) the MS database of the Department of 
                        Veterans Affairs;
                            ``(iii) current MS registries, including 
                        the New York State MS Registry and the North 
                        American Research Committee on MS (NARCOMS) 
                        Registry; and
                            ``(iv) any other existing or relevant 
                        databases that collect or maintain information 
                        on neurological diseases identified by 
                        researchers or recommended by the Advisory 
                        Committee established in subsection (b); and
                    ``(B) provide for research access to MS data as 
                recommended by the Advisory Committee established 
                pursuant to 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 other federal agencies.--
        Notwithstanding the recommendations of the Advisory Committee 
        established pursuant to 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) are made available to 
        agencies such as the National Institutes of Health, the 
        Department of Veterans Affairs, and the Department of Defense.
    ``(e) Definition.--For the purposes of this section, the term 
`national voluntary health association' means a national nonprofit 
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 $5,000,000 for each of fiscal 
years 2009 through 2013.''.
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