(1) Cavernous angioma, also termed ‘‘cerebral 
cavernous malformations’’ or ‘‘CCM’’, affects an es-
timated 1,500,000 people in the United States. 
(2) Cavernous angioma is a devastating blood 
vessel disease that is characterized by the presence 
of vascular lesions that develop and grow within the 
brain and spinal cord. 
(3) Detection of cavernous angioma lesions is 
achieved through costly and specialized medical im-
aging techniques. These techniques are often not 
readily available where patients live, and require se-
dation for children and disabled adults. 
(4) Cavernous angioma is a common type of 
vascular anomaly, but individuals may not be aware 
that they have the disease until the onset of serious 
clinical symptoms. In the genetic forms, they may 
not be aware that it may be passed on to their chil-
dren. 
(5) 
Individuals 
diagnosed 
with 
cavernous 
angioma may experience neurological deficits, sei-
zure, stroke, or sudden death. 
(6) Due to limited research with respect to cav-
ernous angioma, there is no treatment regimen for 
the disease other than brain and spinal surgery. 
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(7) Some individuals with cavernous angioma 
are not candidates for brain surgery. No alternative 
treatment option is available for such individuals. 
(8) There is a shortage of physicians who are 
familiar with cavernous angioma and affected indi-
viduals may find it difficult to receive timely diag-
nosis and appropriate care. 
(9) Due to the presence of a specific disease- 
causing mutation, termed the ‘‘common Hispanic 
mutation’’ that has passed through as many as 17 
generations of Americans descended from the origi-
nal Spanish settlers of the Southwest in the 1590s, 
New Mexico has the highest population density of 
cavernous angioma in the world. Cavernous angioma 
affects thousands of individuals in New Mexico and 
with ancestry in New Mexico. 
(10) Other States with high rates of cavernous 
angioma due to the common Hispanic Mutation in-
clude Texas, Arizona, and Colorado. 
(11) To address the public health threat posed 
by cavernous angioma in New Mexico and through-
out the United States, there is a need to identify in-
stitutions capable of running clinical trial for this 
debilitating brain disorder. 
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SEC. 3. CAVERNOUS ANGIOMA RESEARCH ACTIVITIES. 
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: 
‘‘SEC. 409K. CAVERNOUS ANGIOMA RESEARCH ACTIVITIES. 
‘‘(a) EXPANSION, INTENSIFICATION, AND COORDINA-
TION
OF ACTIVITIES.—The Director of NIH, acting 
through the director of the National Institute of Neuro-
logical Disorders and Stroke, shall expand and intensify 
programs of the National Institutes of Health or may 
award grants and cooperative agreements to public or non-
profit private entities (including State health departments, 
political subdivisions of States, universities, and other edu-
cational entities) for research and related activities con-
cerning cavernous angioma. 
‘‘(b) ACTIVITIES.—In expanding and intensifying 
programs under subsection (a), the Director of NIH may 
carry out the following: 
‘‘(1) BASIC, TRANSLATIONAL, AND
CLINICAL 
RESEARCH.—Conduct or financially support basic, 
clinical, and translational research on cavernous 
angioma, including research on the following: 
‘‘(A) Proteomic, pharmacological, and cell 
biological analysis of the cerebral cavernous 
malformations (referred to in this section as the 
‘CCM’) molecules. 
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‘‘(B) Continued development and expan-
sion of novel animal models for cavernous 
angioma preclinical research. 
‘‘(C) Early detection, diagnosis, and treat-
ment of cavernous angioma. 
‘‘(D) Biological mechanisms for lesion gen-
esis, development, and maturation. 
‘‘(E) Biological mechanisms for lesion 
bleeding and symptomology. 
‘‘(F) Novel biomedical and pharmacological 
interventions designed to prohibit new lesion de-
velopment, lesion growth, and lesion bleeding. 
‘‘(G) Contributions of genetic variation to 
clinical presentation as targets for therapy. 
‘‘(H) Identification and development of 
biomarkers to measure phenotypic variation. 
‘‘(I) Research related to improving the 
quality of life for individuals with cavernous 
angioma and their families. 
‘‘(J) Clinical training programs aimed at 
increasing the number of scientists and clini-
cians who are trained to treat patients and 
carry out these research directions. 
‘‘(2) FACILITATION OF RESEARCH RESOURCES; 
CLINICAL TRIAL PREPAREDNESS.— 
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‘‘(A) COORDINATION.—Identify and sup-
port the development of a clinical and research 
coordinating center with the potential of coordi-
nating a multi-site clinical drug trial for cav-
ernous angioma. Such coordinating center shall 
provide a model for additional trial sites, facili-
tate medical research to develop a cure for cav-
ernous angioma, and enhance the medical care 
of individuals with cavernous angioma nation-
wide. Such coordinating center shall— 
‘‘(i) have an institutional infrastruc-
ture that is capable of hosting a clinical 
trial site and facilitating translational 
projects and collaborations for clinical 
trials; 
‘‘(ii) have the capacity to maintain 
programs dedicated to patient education, 
patient outreach, and awareness, includ-
ing— 
‘‘(I) launching a national multi-
media public awareness campaign; 
‘‘(II) creating and distributing 
patient education materials for dis-
tribution by national physician and 
surgeon offices; 
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