‘‘(III) establishing an education 
program for elementary and sec-
ondary school nurses to facilitate early 
detection and diagnosis of cavernous 
angioma in areas of high cavernous 
angioma population density; 
‘‘(IV) coordinating regular pa-
tient and family-oriented educational 
conferences; and 
‘‘(V) developing nationally rel-
evant electronic health teaching and 
communication tools and a network of 
professional capacity and patient and 
family support; 
‘‘(iii) have the capacity to establish 
and maintain communication with other 
major cavernous angioma research and 
care institutions internationally for infor-
mation sharing and coordination of re-
search activities; 
‘‘(iv) have demonstrated clinical ex-
pertise in cavernous angioma management; 
‘‘(v) have a sufficient number of eligi-
ble patients for participation with par-
ticular focus on unique subpopulations in-
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cluding Common Hispanic Mutation and 
CCM3 gene mutation carriers; and 
‘‘(vi) have a telehealth infrastructure 
to support and to provide clinical consulta-
tion for remote and underserved commu-
nities. 
‘‘(B) PARTICIPATION.—Identify and sup-
port the development of clinical and research 
participation centers with the potential to par-
ticipate 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 na-
tional and international centers. Such participa-
tion centers shall— 
‘‘(i) have an institutional infrastruc-
ture capable of hosting a clinical trial site 
and facilitating translational projects and 
collaborations for clinical trials; 
‘‘(ii) have the capacity to maintain 
communication with other major cavernous 
angioma research and care institutions 
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internationally for information sharing and 
coordination of research activities; 
‘‘(iii) have demonstrated clinical ex-
pertise in cavernous angioma management; 
and 
‘‘(iv) have a sufficient numbers of eli-
gible patients for participation with par-
ticular focus on unique subpopulations in-
cluding 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. 
‘‘(c) TRAINING PROGRAM FOR CLINICIANS AND SCI-
ENTISTS.— 
‘‘(1) IN GENERAL.—Eligible coordinating and 
participation centers under this section shall estab-
lish or expand training programs for medical and al-
lied health clinicians and scientists in clinical prac-
tice and research relevant to cavernous angioma. 
‘‘(2) RESEARCH RESOURCES.—In carrying out 
this subsection, the Director of NIH may— 
‘‘(A) use information collected by the Na-
tional Institutes of Health pursuant to other 
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provisions of law or prior to the date of the en-
actment of this section; 
‘‘(B) take into consideration the avail-
ability of other research resources; 
‘‘(C) encourage the use of research re-
sources for research on, and development of, 
therapies and treatments for individuals with 
cavernous angioma; and 
‘‘(D) encourage the inclusion of individuals 
with cavernous angioma in clinical trials con-
ducted or supported by the National Institutes 
of Health. 
‘‘(3) CAVERNOUS ANGIOMA CONSORTIUM.—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. 4. CENTERS FOR DISEASE CONTROL AND PREVEN-
TION CAVERNOUS ANGIOMA SURVEILLANCE 
AND RESEARCH PROGRAMS. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 317T the following: 
‘‘SEC. 317U. CAVERNOUS ANGIOMA SURVEILLANCE AND RE-
SEARCH PROGRAMS. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention, 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 the collection, analysis, 
and reporting of data on cavernous angioma. In making 
such awards, the Secretary may provide direct technical 
assistance, including personnel support, in lieu of cash. 
‘‘(b) NATIONAL CAVERNOUS ANGIOMA EPIDEMI-
OLOGY PROGRAM.— 
‘‘(1) GRANTS.—The Secretary, acting through 
the Director of the Centers for Disease Control and 
Prevention, may award grants to public or nonprofit 
private entities (including State health departments, 
political subdivisions of States, universities, and 
other educational entities) for the purpose of car-
rying out epidemiological activities regarding cav-
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ernous angioma, including collecting and analyzing 
information on the number, incidence, correlates, 
and symptoms of cases and the clinical utility (in-
cluding costs and benefits) of specific practice pat-
terns. In making such awards, the Secretary may 
provide direct technical assistance, including per-
sonnel support, in lieu of cash. 
‘‘(2) NATIONAL SURVEILLANCE PROGRAM.—In 
carrying out subsection (a), the Secretary shall— 
‘‘(A) provide for a national surveillance 
program; and 
‘‘(B) where possible, ensure that the sur-
veillance program is coordinated with the data 
and sample collection activities of the National 
Institutes of Health under section 409K.’’. 
SEC. 5. FOOD AND DRUG ADMINISTRATION CAVERNOUS 
ANGIOMA CLINICAL TRIAL PREPAREDNESS 
AND SUPPORT PROGRAM. 
(a) INVESTIGATIONAL NEW DRUG APPLICATION.— 
The Commissioner of Food and Drugs shall work with 
clinical centers, investigators, and advocates to support 
appropriate investigational new drug application under 
section 505(i) of the Federal Food, Drug, and Cosmetic 
Act in an effort to hasten the pace of clinical trials for 
cavernous angioma. 
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