H.R.4138 - Neuromyelitis Optica Consortium Act

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. view all titles (2)

All Bill Titles

  • Official: 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. as introduced.
  • Short: Neuromyelitis Optica Consortium Act as introduced.

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Introduced
 
House
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Senate
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President
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03/05/12
 
 
 
 
 
 
 

Official Summary

Neuromyelitis Optica Consortium Act - Expresses the sense of Congress that there is a need to: (1) establish and coordinate a multicenter research effort to comprehensively study the causes of neuromyelitis optica (NMO) and identify potential biomarkers; and (2) encourage a collaborative ef

Official Summary

Neuromyelitis Optica Consortium Act - Expresses the sense of Congress that there is a need to:
(1) establish and coordinate a multicenter research effort to comprehensively study the causes of neuromyelitis optica (NMO) and identify potential biomarkers; and
(2) encourage a collaborative effort among academic medical centers with epidemiological study groups to investigate environmental, nutritional, and genetic factors with respect to, and the pathological and epidemiological characteristics of, NMO. Amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH), in coordination with the Director of the National Institute on Minority Health and Health Disparities, to establish, administer, and coordinate a National Neuromyelitis Optica Consortium to:
(1) provide five-year grants to eligible consortia to conduct research regarding the causes of, and the risk factors and biomarkers associated with, NMO;
(2) assemble a panel of experts to provide guidance and recommendations for the development of a common study design, standard methods for collecting a minimum data set from study participants, specific analytical methods for examining data, provisions for consensus review of enrolled cases, and an integrated data collection network; and
(3) designate a central laboratory to collect, analyze, and aggregate data with respect to funded research and to make such data and analysis available to researchers. Requires a consortium (a partnership of two or more universities, health care organizations, or government agencies, or any combination of such entities, serving a designated catchment area), to be eligible for a grant, to demonstrate that:
(1) it 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, and
(2) such area does not overlap with the designated catchment area of another consortium already receiving a grant under this Act.

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