Sec. 4. Establishment of the national neuromyelitis optica consortium
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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: Not later than 1 year after the date of the enactment of this section, the Secretary, acting through the Director of NIH, and in coordination with the Director of the National Institute on Minority Health and Health Disparities, shall establish, administer, and coordinate a National Neuromyelitis Optica Consortium (in this section referred to as the NNO Consortium ) for the purposes described in paragraph (2).
The purposes of the NNO Consortium shall be the following: Providing grants of not fewer than 5 years duration to eligible consortia for the purpose of conducting research with respect to the causes of, and the risk factors and biomarkers associated with, NMO. Assembling a panel of experts to provide, with respect to research funded by the NNO Consortium, ongoing guidance and recommendations for the development of the following: A common study design. Standard protocols, methods, procedures, and assays for collecting from individuals enrolled as study participants a minimum dataset that includes the following:
Complete medical history. Neurologic examination. Biospecimens, including blood, spinal fluid, DNA, and RNA. Radiological data including magnetic resonance imaging (MRI). Specific analytical methods for examining data. Provisions for consensus review of enrolled cases. An integrated data collection network. Designating a central laboratory to collect, analyze, and aggregate data with respect to research funded by the NNO Consortium and to make such data and analysis available to researchers.
To be eligible for a grant under this section, a consortium shall demonstrate the following: 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. 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. Not later than 1 year after the date of the enactment of this section and annually thereafter, the Secretary, acting through the Director 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 receiving grants through the NNO Consortium.
At the discretion of the Secretary, such report may be combined with other similar or existing reports. 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. 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. For purposes of this section:
The term catchment area means a defined area for which population data are available. 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 designated catchment area. .
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Sec. 4
Establishment of the national neuromyelitis optica consortium
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