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Version 00 · Introduced in House · Mar 5, 2012
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.
People & committees
Rep. Lee, Barbara [D-CA-9] · D–CA
Legislative record
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Referred to the Subcommittee on Health.
Referred to the House Committee on Energy and Commerce.
Introduced in House
Introduced in House
Primary sources
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Source last updated: Aug 14, 2025. Consult Congress.gov for the current record.
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