I 
111TH CONGRESS 
1ST SESSION H. R. 1362 
To amend the Public Health Service Act to provide for the establishment 
of permanent national surveillance systems for multiple sclerosis, Parkin-
son’s disease, and other neurological diseases and disorders. 
IN THE HOUSE OF REPRESENTATIVES 
MARCH 5, 2009 
Mr. VAN HOLLEN (for himself, Mr. BURGESS, Mrs. MALONEY, Mr. UPTON, 
Mr. CARNAHAN, and Mr. KING of New York) 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 permanent national surveillance sys-
tems for multiple sclerosis, Parkinson’s disease, and 
other neurological diseases and disorders. 
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 and Par-
kinson’s Disease Registries Act’’. 
SEC. 2. FINDINGS. 
Congress makes the following findings: 
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(1) Multiple sclerosis (referred to in this section 
as ‘‘MS’’) is a progressive, disabling disease that af-
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) 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. 
(4) Parkinson’s disease is a chronic, progressive 
neurological disease. The primary pathologic feature 
of Parkinson’s disease is degeneration and pre-
mature death of dopamine-producing brain cells. 
(5) Parkinson’s is the second-most common 
neurodegenerative disease in the United States. 
(6) It is estimated that more than 1,000,000 
Americans are currently fighting Parkinson’s dis-
ease, and 60,000 Americans are newly diagnosed 
every year. 
(7) Although estimates exist, there is no con-
firmed data regarding prevalence or diagnosed cases 
of Parkinson’s disease or MS. 
(8) The causes of Parkinson’s disease and MS 
are not well understood. 
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(9) There is no known cure for Parkinson’s dis-
ease or MS. 
(10) Studies have found relationships between 
both MS and Parkinson’s disease and environmental 
and genetic factors, but those relationships are not 
well understood. 
(11) Better data are needed to understand the 
economic impact of Parkinson’s disease, MS, and 
other neurological diseases. 
(12) 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. 
(13) Currently, state-of-the-art treatment for 
Parkinson’s disease is based on a 40-year-old phar-
maceutical therapy, which only treats some of the 
motor symptoms of Parkinson’s disease. Deep brain 
stimulation surgery is available for certain patients 
and treats some symptoms of Parkinson’s disease. 
(14) No therapies exist that will slow or stop 
progression of Parkinson’s disease. There is no ef-
fective, lasting therapy for all features of Parkin-
son’s disease. 
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(15) Central nervous system drugs, including 
therapies for MS, Parkinson’s disease, and other 
neurological diseases, are the slowest in the drug de-
velopment pipeline, taking an average of 15 years 
post discovery for new therapies to reach the mar-
ket. 
(16) Several small and uncoordinated MS and 
Parkinson’s disease registries, surveillance systems, 
and databases exist in the United States and 
throughout the world. 
(17) A single national system to collect and 
store information on the incidence and prevalence of 
MS, Parkinson’s disease, or other neurological dis-
eases in the United States does not exist. 
(18) The Agency for Toxic Substances and Dis-
ease Registry (ATSDR) has established a series of 
small pilot studies, beginning in fiscal year 2006, to 
evaluate the feasibility of various methodologies to 
create an MS surveillance system at the national 
level. 
(19) The national surveillance system method-
ology resulting from the MS pilot studies should be 
expanded upon and developed into a national surveil-
lance system for Parkinson’s disease. 
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(20) The establishment of separate, coordinated 
national surveillance systems for Parkinson’s disease 
and MS will help— 
(A) to identify the incidence and preva-
lence of these diseases in the United States; 
(B) to collect demographic and other data 
important to the study of MS and Parkinson’s 
disease; 
(C) to produce epidemiologically sound 
data that can be used to compare with cluster 
information, data sets of the Department of 
Veterans Affairs, environmental exposure data, 
and other information; 
(D) to promote a better understanding of 
causes, prevention, and treatment of disease; 
(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; 
(G) to enhance biomedical and clinical re-
search by providing a basis for population com-
parisons; 
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(H) to enhance efforts to develop better di-
agnosis and progression biomarkers for MS and 
Parkinson’s disease; and 
(I) to enhance efforts to find treatments 
and a cure for MS and Parkinson’s disease. 
SEC. 3. SURVEILLANCE SYSTEMS. 
Part P of title III of the Public Health Service Act 
(42 U.S.C. 280g et seq.) is amended— 
(1) by redesignating the second and third sec-
tions 399R (added by section 2 of Public Law 110– 
373 and section 3 of Public Law 110–374) as sec-
tions 399S and 399T, respectively; and 
(2) by adding at the end the following: 
‘‘SEC. 399U. SURVEILLANCE OF NEUROLOGICAL DISEASES. 
‘‘(a) MULTIPLE SCLEROSIS NATIONAL SURVEIL-
LANCE SYSTEM.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
receipt of the report described in subsection (c)(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— 
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of individuals who are diagnosed with the dis-
ease; and 
‘‘(C) other matters as recommended by the 
Advisory Committee established pursuant to 
subsection (c). 
‘‘(b) PARKINSON’S DISEASE NATIONAL SURVEIL-
LANCE SYSTEM.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
the receipt of the report described in subsection 
(c)(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 Parkinson’s disease, 
shall— 
‘‘(A) develop a system to collect data on 
Parkinson’s disease including information with 
respect to the incidence and prevalence of the 
disease in the United States; 
‘‘(B) establish a national surveillance sys-
tem for the collection and storage of such data 
to include a population-based registry of cases 
of Parkinson’s disease in the United States; 
and 
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‘‘(C) provide analysis regarding expansion 
of national disease surveillance systems for 
other neurological diseases utilizing the MS and 
Parkinson’s disease national surveillance sys-
tems’ process and structure. 
‘‘(2) PURPOSE.—It is the purpose of the reg-
istry established under paragraph (1)(B) to gather 
available data concerning— 
‘‘(A) Parkinson’s disease, including the in-
cidence and prevalence of Parkinson’s disease in 
the United States; 
‘‘(B) the age, race or ethnicity, gender, 
military service if applicable, and family history 
of individuals who are diagnosed with the dis-
ease; and 
‘‘(C) other matters as recommended by the 
Advisory Committee established pursuant to 
subsection (c). 
‘‘(c) 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 Neurological Disease Registries 
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(referred to in this section as the ‘Advisory Com-
mittee’). The Advisory Committee shall be composed 
of at least one member, to be appointed by the Sec-
retary, 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) National voluntary health associa-
tions that focus solely on Parkinson’s disease 
and have demonstrated experience in Parkin-
son’s disease public policy, research, care, or 
patient services. 
‘‘(C) The National Institutes of Health, to 
include, upon the recommendation of the Direc-
tor of the National Institutes of Health, rep-
resentatives from the Office of Portfolio Anal-
ysis and Strategic Initiatives, the National In-
stitute of Neurological Disorders and Stroke, 
the National Institute of Environmental Health 
Sciences, the National Institute on Aging, and 
the National Institute of Allergy and Infectious 
Diseases. 
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‘‘(D) The Department of Veterans Affairs, 
to include representatives from the Parkinson’s 
Disease Research Education and Clinical Cen-
ters and the MS Centers of Excellence. 
‘‘(E) The Department of Defense, to in-
clude representatives from the Parkinson’s dis-
ease and MS research programs. 
‘‘(F) The Food and Drug Administration. 
‘‘(G) The Centers for Disease Control and 
Prevention, to include representatives from the 
Agency for Toxic Substances and Disease Reg-
istry. 
‘‘(H) Patients with MS and Parkinson’s 
disease or their family members. 
‘‘(I) Clinicians with expertise on MS and 
Parkinson’s disease. 
‘‘(J) Research scientists with experience 
conducting translational research or creating 
systems that support translating basic discov-
eries into treatments. 
‘‘(K) Epidemiologists with experience in 
data registries. 
‘‘(L) Geneticists or experts in genetics who 
have experience with the genetics of MS and 
Parkinson’s disease. 
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‘‘(M) Statisticians. 
‘‘(N) Bioethicists. 
‘‘(O) Attorneys. 
‘‘(P) Other individuals, organizations, or 
agencies with an interest in developing and 
maintaining the MS and Parkinson’s disease 
national surveillance systems. 
‘‘(Q) Experts in additional neurological 
diseases, as appropriate, based on development 
and implementation of national surveillance sys-
tems for other neurological diseases and dis-
orders. 
‘‘(2) DUTIES.—The Advisory Committee shall 
review information and make recommendations to 
the Secretary concerning— 
‘‘(A) the development and maintenance of 
the MS and Parkinson’s disease national sur-
veillance systems; 
‘‘(B) the use and coordination of existing 
databases that collect or maintain information 
on neurological diseases and disorders; 
‘‘(C) the type of information to be collected 
and stored in the systems; 
‘‘(D) the manner in which such data is to 
be collected; 
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‘‘(E) the use and availability of such data 
including guidelines for such use; and 
‘‘(F) the application of MS and Parkin-
son’s disease registry methodologies to benefit 
other neurological diseases and disorders, in-
cluding analysis of how other neurological dis-
ease surveillance systems or registries can be 
developed, piloted, and implemented nationally 
utilizing the MS and Parkinson’s disease na-
tional surveillance systems’ process and struc-
ture. 
‘‘(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 
to Congress concerning the review conducted under 
paragraph (2) that contains the recommendations of 
the Advisory Committee with respect to the results 
of such review. 
‘‘(d) GRANTS.—Notwithstanding the recommenda-
tions of the Advisory Committee under subsection (c), 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, 
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