Sec. 3. Cavernous angioma research activities
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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 at the end the following: The Director of NIH, acting through the director of the National Institute of Neurological Disorders and Stroke, shall expand and intensify programs of the National Institutes of Health or may award grants and cooperative agreements to public or nonprofit private entities (including State health departments, political subdivisions of States, universities, and other educational entities) for research and related activities concerning cavernous angioma.
In expanding and intensifying programs under subsection (a), the Director of NIH may carry out the following: Conduct or financially support basic, clinical, and translational research on cavernous angioma, including research on the following: Proteomic, pharmacological, and cell biological analysis of the cerebral cavernous malformations (referred to in this section as the CCM ) molecules. Continued development and expansion of novel animal models for cavernous angioma preclinical research.
Early detection, diagnosis, and treatment of cavernous angioma. Biological mechanisms for lesion genesis, development, and maturation. Biological mechanisms for lesion bleeding and symptomology. Novel biomedical and pharmacological interventions designed to prohibit new lesion development, lesion growth, and lesion bleeding. Contributions of genetic variation to clinical presentation as targets for therapy. Identification and development of biomarkers to measure phenotypic variation.
Research related to improving the quality of life for individuals with cavernous angioma and their families. Clinical training programs aimed at increasing the number of scientists and clinicians who are trained to treat patients and carry out these research directions. Identify and support the development of a clinical and research coordinating center with the potential of coordinating a multi-site clinical drug trial for cavernous angioma. Such coordinating center shall provide a model for additional trial sites, facilitate medical research to develop a cure for cavernous angioma, and enhance the medical care of individuals with cavernous angioma nationwide.
Such coordinating center shall— have an institutional infrastructure that is capable of hosting a clinical trial site and facilitating translational projects and collaborations for clinical trials; have the capacity to maintain programs dedicated to patient education, patient outreach, and awareness, including— launching a national multimedia public awareness campaign; creating and distributing patient education materials for distribution by national physician and surgeon offices; establishing an education program for elementary and secondary school nurses to facilitate early detection and diagnosis of cavernous angioma in areas of high cavernous angioma population density; coordinating regular patient and family-oriented educational conferences; and developing nationally relevant electronic health teaching and communication tools and a network of professional capacity and patient and family support; have the capacity to establish and maintain communication with other major cavernous angioma research and care institutions internationally for information sharing and coordination of research activities; have demonstrated clinical expertise in cavernous angioma management; have a sufficient number of eligible patients for participation with particular focus on unique subpopulations including Common Hispanic Mutation and CCM3 gene mutation carriers; and have a telehealth infrastructure to support and to provide clinical consultation for remote and underserved communities.
Identify and support the development of clinical and research participation centers with the potential to participate in a multi-site clinical drug trial for cavernous angioma. Such participation centers may facilitate medical research to develop a cure for cavernous angioma and enhance the medical care of individuals with cavernous angioma in partnership with the coordinating center under subparagraph
(A)and other national and international centers. Such participation centers shall— have an institutional infrastructure capable of hosting a clinical trial site and facilitating translational projects and collaborations for clinical trials; have the capacity to maintain communication with other major cavernous angioma research and care institutions internationally for information sharing and coordination of research activities; have demonstrated clinical expertise in cavernous angioma management; and have a sufficient numbers of eligible patients for participation with particular focus on unique subpopulations including Common Hispanic Mutation and CCM3 gene mutation carriers as these unique populations may provide insight to other genetic and non-genetic forms of the illness. Eligible coordinating and participation centers under this section shall establish or expand training programs for medical and allied health clinicians and scientists in clinical practice and research relevant to cavernous angioma. In carrying out this subsection, the Director of NIH may— use information collected by the National Institutes of Health pursuant to other provisions of law or prior to the date of the enactment of this section; take into consideration the availability of other research resources; encourage the use of research resources for research on, and development of, therapies and treatments for individuals with cavernous angioma; and encourage the inclusion of individuals with cavernous angioma in clinical trials conducted or supported by the National Institutes of Health. The Director of NIH may provide for the participation of agencies of the National Institutes of Health in a consortium to facilitate the exchange of information and to make the research effort on cavernous angioma more efficient and effective by ensuring consistent communication, minimizing duplication of effort, and integrating the varied perspectives of partner agencies, organizations, and individuals. Such consortium shall include at least one national cavernous angioma patient advocacy organization and may be the same consortium receiving a grant or contract under subsection (b)(2)(A). .
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Sec. 3
Cavernous angioma research activities
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