I 
113TH CONGRESS 
1ST SESSION 
H. R. 660 
To amend the Public Health Service Act to create a National Neuromyelitis 
Optica Consortium to provide grants and coordinate research with respect 
to the causes of, and risk factors associated with, neuromyelitis optica, 
and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 13, 2013 
Ms. LEE of California introduced the following bill; which was referred to the 
Committee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to create a National 
Neuromyelitis Optica Consortium to provide grants and 
coordinate research with respect to the causes of, and 
risk factors associated with, neuromyelitis optica, and 
for other purposes. 
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 ‘‘Neuromyelitis Optica 
Consortium Act’’. 
SEC. 2. FINDINGS. 
Congress finds the following: 
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(1) Neuromyelitis optica (NMO) is a dev-
astating neurologic disease leading to blindness and 
paralysis. 
(2) There are an estimated 11,000 patients 
with NMO in the United States. 
(3) Women are affected 7 to 9 times more than 
men, and a large proportion of NMO patients are 
African-American. 
(4) The average age at diagnosis is 41 years, 
but the range is broad and includes children as 
young as 2 years of age and adults as old as 89 
years of age. 
(5) NMO incurs substantial costs for affected 
patients and their families. 
(6) The cause of NMO is unknown, but it is hy-
pothesized to be autoimmune in nature. 
(7) More than 90 percent of NMO patients will 
suffer recurrent disease and accumulate neurologic 
disability. 
(8) Because of their relatively low overall inci-
dence, orphan diseases like NMO frequently do not 
receive sufficient attention and research funding. 
(9) No single institution has a sufficient num-
ber of patients to independently conduct research 
that will adequately address the cause of NMO. 
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(10) There has been no comprehensive study 
analyzing all relevant clinical, biological, and epide-
miological aspects of NMO to identify potential risk 
factors and biomarkers for NMO. 
(11) We can apply our understanding of NMO 
to the study of other autoimmune diseases, including 
multiple sclerosis and systemic lupus erythematosus. 
SEC. 3. SENSE OF CONGRESS. 
It is the sense of Congress that there is a need— 
(1) to establish and coordinate a multicenter re-
search effort based on collaboration between regional 
consortia and governmental and nongovernmental 
entities in order to— 
(A) comprehensively study the causes of 
NMO; and 
(B) identify potential biomarkers of disease 
activity; and 
(2) to encourage a collaborative effort among 
academic medical centers with epidemiological study 
groups to gather comprehensive and detailed infor-
mation for each patient enrolled in those groups, in 
order to investigate environmental, nutritional, and 
genetic factors with respect to, and the pathological 
and epidemiological characteristics of, NMO. 
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SEC. 
4. 
ESTABLISHMENT 
OF 
THE 
NATIONAL 
NEUROMYELITIS OPTICA CONSORTIUM. 
Part B of title IV of the Public Health Service Act 
(42 U.S.C. 284 et seq.) is amended by adding after section 
409J the following new section: 
‘‘SEC. 409K. NATIONAL NEUROMYELITIS OPTICA CONSOR-
TIUM. 
‘‘(a) 
ESTABLISHMENT
OF
THE
NATIONAL 
NEUROMYELITIS OPTICA CONSORTIUM.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
the date of the enactment of this section, the Sec-
retary, acting through the Director of NIH, and in 
coordination with the Director of the National Insti-
tute on Minority Health and Health Disparities, 
shall establish, administer, and coordinate a Na-
tional Neuromyelitis Optica Consortium (in this sec-
tion referred to as the ‘NNO Consortium’) for the 
purposes described in paragraph (2). 
‘‘(2) PURPOSES.—The purposes of the NNO 
Consortium shall be the following: 
‘‘(A) Providing grants of not fewer than 5 
years duration to eligible consortia for the pur-
pose of conducting research with respect to the 
causes of, and the risk factors and biomarkers 
associated with, NMO. 
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‘‘(B) Assembling a panel of experts to pro-
vide, with respect to research funded by the 
NNO Consortium, ongoing guidance and rec-
ommendations for the development of the fol-
lowing: 
‘‘(i) A common study design. 
‘‘(ii) Standard protocols, methods, 
procedures, and assays for collecting from 
individuals enrolled as study participants a 
minimum dataset that includes the fol-
lowing: 
‘‘(I) Complete medical history. 
‘‘(II) Neurologic examination. 
‘‘(III) Biospecimens, including 
blood, spinal fluid, DNA, and RNA. 
‘‘(IV) Radiological data including 
magnetic resonance imaging (MRI). 
‘‘(iii) Specific analytical methods for 
examining data. 
‘‘(iv) Provisions for consensus review 
of enrolled cases. 
‘‘(v) An integrated data collection net-
work. 
‘‘(C) Designating a central laboratory to 
collect, analyze, and aggregate data with re-
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spect to research funded by the NNO Consor-
tium and to make such data and analysis avail-
able to researchers. 
‘‘(3) ELIGIBLE CONSORTIA.—To be eligible for 
a grant under this section, a consortium shall dem-
onstrate the following: 
‘‘(A) The consortium has the capability to 
enroll as research participants a minimum of 25 
individuals with a diagnosis of NMO from the 
consortium’s designated catchment area. 
‘‘(B) The designated catchment area of the 
consortium does not overlap with the designated 
catchment area of another consortium already 
receiving a grant under this section. 
‘‘(4) REPORT.—Not later than 1 year after the 
date of the enactment of this section and annually 
thereafter, the Secretary, acting through the Direc-
tor of NIH, shall submit to Congress a report with 
respect to the NNO Consortium, to be made publicly 
available, including a summary of research funded 
by the NNO Consortium and a list of consortia re-
ceiving grants through the NNO Consortium. At the 
discretion of the Secretary, such report may be com-
bined with other similar or existing reports. 
‘‘(5) AUTHORIZATION OF APPROPRIATIONS.— 
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‘‘(A) IN GENERAL.—There is authorized to 
be appropriated $25,000,000 for each of fiscal 
years 2014 through 2018, to remain available 
until expended, to carry out this section. 
‘‘(B) SENSE
OF
CONGRESS.—It is the 
sense of Congress that funds appropriated to 
carry out this section should be in addition to 
funds otherwise available or appropriated to 
carry out the activities described in this section. 
‘‘(b) DEFINITIONS.—For purposes of this section: 
‘‘(1) CATCHMENT AREA.—The term ‘catchment 
area’ means a defined area for which population 
data are available. 
‘‘(2) CONSORTIUM.—The term ‘consortium’ 
means a partnership of 2 or more universities, 
health care organizations, or government agencies, 
or any combination of such entities, serving a des-
ignated catchment area.’’. 
Æ 
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