I 
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 Na-
tional Surveillance System. 
Be it enacted by the Senate and House of Representa-
tives 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 af-
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fects 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 aver-
age 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 treat-
ment of MS, which have shown modest success in re-
ducing 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 reg-
istries 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. 
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(10) The Agency for Toxic Substances and Dis-
ease 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 na-
tional level. 
(11) The establishment of a national surveil-
lance system will help— 
(A) to identify the incidence and preva-
lence 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 clus-
ter information, data sets of the Department of 
Veterans Affairs data sets, and other informa-
tion; 
(D) to promote a better understanding of 
MS; 
(E) to better understand public and pri-
vate resource impact; 
(F) to collect information that is important 
for research into genetic and environmental risk 
factors for MS; 
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(G) to enhance biomedical and clinical re-
search by providing a basis for population com-
parisons; 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 SURVEIL-
LANCE 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 Reg-
istry and in consultation with a national voluntary 
health organization with experience serving the pop-
ulation of individuals with multiple sclerosis (re-
ferred 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 
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‘‘(B) establish a national surveillance sys-
tem 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 reg-
istry established under paragraph (1)(B) to gather 
available data concerning— 
‘‘(A) MS, including the incidence and prev-
alence of MS in the United States; 
‘‘(B) the age, race or ethnicity, gender, 
and family history of individuals who are diag-
nosed 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 Advi-
sory Committee on the MS National Surveillance 
System (referred to in this section as the ‘Advisory 
Committee’). The Advisory Committee shall be com-
posed of at least one member, to be appointed by the 
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Secretary, acting through the Director of the Agency 
for Toxic Substances and Disease Registry, rep-
resenting each of the following: 
‘‘(A) National voluntary health associa-
tions that focus solely on MS and have dem-
onstrated experience in MS research, care, or 
patient services. 
‘‘(B) The National Institutes of Health, to 
include, upon the recommendation of the Direc-
tor of the National Institutes of Health, rep-
resentatives from the National Institute of Neu-
rological Disorders and Stroke, the National In-
stitute 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. 
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‘‘(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 Sys-
tem. 
‘‘(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 col-
lected 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 estab-
lished, the Advisory Committee shall submit a report 
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concerning the review conducted under paragraph 
(2) that contains the recommendations of the Advi-
sory Committee with respect to the results of such 
review. 
‘‘(c) GRANTS.—Notwithstanding the recommenda-
tions 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 FED-
ERAL REGISTRIES.— 
‘‘(1) IN GENERAL.—In establishing the MS Na-
tional 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 co-
ordinate existing data and surveillance systems, 
surveys, registries, and other Federal public 
health and environmental infrastructure wher-
ever possible, including— 
‘‘(i) the 2 MS surveillance pilot stud-
ies initiated in fiscal year 2006 by the Cen-
ters for Disease Control and Prevention 
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and the Agency for Toxic Substances and 
Disease Registry; 
‘‘(ii) the MS database of the Depart-
ment 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 informa-
tion on neurological diseases identified by 
researchers or recommended by the Advi-
sory Committee established in subsection 
(b); and 
‘‘(B) provide for research access to MS 
data as recommended by the Advisory Com-
mittee established pursuant to subsection (b) to 
the extent permitted by applicable statutes and 
regulations and in a manner that protects per-
sonal 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 pri-
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vacy statutes and regulations, the Secretary shall en-
sure that epidemiological and other types of informa-
tion obtained under subsection (a) are made avail-
able 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 af-
filiated 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.’’. 
Æ 
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