search plan set forth by the NIH Research Plan for 
Down Syndrome published in October 2007, the Di-
rector of NIH may conduct basic, clinical, and 
translational research on Down syndrome, including 
research on the following: 
‘‘(A) Early detection, diagnosis, and treat-
ment of Down syndrome. 
‘‘(B) The biological mechanisms respon-
sible for structural and functional anomalies in 
cells and tissues affected by Down syndrome. 
‘‘(C) The biological mechanisms respon-
sible for cognitive and behavioral dysfunction 
resulting from Down syndrome. 
‘‘(D) 
Novel 
biomedical 
and 
pharma-
cological interventions designed to promote or 
enhance cognition and related brain functions 
and activities of daily living (ADLs). 
‘‘(E) Co-occurrence of and treatments for 
associated medical and neurobehavioral dis-
orders. 
‘‘(F) Developmental disorders, interven-
tions for congenital heart disease, obstructive 
sleep apnea, coronary heart disease, obesity, 
and metabolism. 
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‘‘(G) Contributions of genetic variation to 
clinical presentation as targets for therapy. 
‘‘(H) Identification of biomarkers for com-
plex phenotypes. 
‘‘(I) Noninvasive imaging in support of ef-
forts 
to 
identify 
other 
genotypes 
and 
phenotypes of Down syndrome. 
‘‘(J) Pharmacological and other therapies 
for common features of Down syndrome includ-
ing Alzheimer’s disease and other Down syn-
drome-related disorders. 
‘‘(K) Research related to improving the 
quality of life for individuals with Down syn-
drome and their families. 
‘‘(L) Research training programs aimed at 
increasing the number of scientists who are 
trained to carry out these research directions. 
‘‘(2) 
FACILITATION
OF
RESEARCH
RE-
SOURCES.— 
‘‘(A) CONTACT
REGISTRY
FOR
INDIVID-
UALS WITH DOWN SYNDROME.— 
‘‘(i) IN
GENERAL.—The Director of 
NIH may award a grant or contract to an 
eligible entity for the purpose of— 
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‘‘(I) identifying individuals with 
Down syndrome across the Nation; 
‘‘(II) collecting the names and 
contact information of such individ-
uals; and 
‘‘(III) maintaining such names 
and contact information in a registry. 
‘‘(ii) CONSENT REQUIRED.—As a con-
dition on the receipt of a grant or contract 
under this subparagraph, an entity shall 
agree that information about any indi-
vidual will be collected or maintained pur-
suant to this subparagraph only if the indi-
vidual has consented to such collection and 
maintenance. 
‘‘(iii) ELIGIBLE
ENTITY
DEFINED.— 
In this subparagraph, the term ‘eligible en-
tity’ means a consortium including at least 
one national Down syndrome patient advo-
cacy organization. 
‘‘(B) RESEARCH
DATABASE
FOR
DOWN 
SYNDROME.— 
‘‘(i) IN
GENERAL.—The Director of 
NIH may establish a database including 
the names, contact information, and each 
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medical condition of individuals with Down 
syndrome. 
‘‘(ii) REQUIREMENTS.—The database 
under clause (i) shall— 
‘‘(I) be searchable by category of 
medical condition; and 
‘‘(II) be used exclusively to facili-
tate research. 
‘‘(iii) CONSENT REQUIRED.—The Di-
rector of NIH may include information 
about an individual in the Research Data-
base for Down Syndrome only with the in-
dividual’s consent. 
‘‘(C) BIOBANK FOR DOWN SYNDROME.— 
‘‘(i) IN
GENERAL.—The Director of 
NIH may expand one or more tissue banks 
maintained or supported by the National 
Institutes of Health— 
‘‘(I) to identify any tissue har-
vested from a tissue donor with Down 
syndrome; 
‘‘(II) to include each medical con-
dition of any such tissue donor; and 
‘‘(III) to allow searches specific 
to tissue identified under subclause (I) 
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and by category of medical condition 
included under subclause (II). 
‘‘(ii) CONSENT REQUIRED.—The Di-
rector of NIH may collect and maintain in-
formation about an individual pursuant to 
this subparagraph only with the individ-
ual’s consent. 
‘‘(D) RESEARCH RESOURCES.—In carrying 
out this paragraph, the Director of NIH may— 
‘‘(i) subject to the consent require-
ments of subparagraphs (A)(ii), (B)(iii), 
and (C)(ii), 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; 
‘‘(ii) take into consideration the avail-
ability of other research resources; 
‘‘(iii) encourage the use of research 
resources for research on, and development 
of, therapies and treatments for individuals 
with Down syndrome; and 
‘‘(iv) encourage the inclusion of indi-
viduals with Down syndrome in clinical 
trials conducted or supported by the Na-
tional Institutes of Health. 
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‘‘(3) DOWN SYNDROME CONSORTIUM.—The Di-
rector 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 Down syndrome 
more efficient and effective by ensuring consistent 
communication, minimizing duplication of effort, and 
integrating the varied perspectives of partner agen-
cies, organizations, and individuals. Such consortium 
shall include at least one national Down syndrome 
patient advocacy organization and may be the same 
consortium receiving a grant or contract under para-
graph (2)(A).’’. 
SEC. 4. CDC DOWN SYNDROME SURVEILLANCE AND RE-
SEARCH 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. DOWN SYNDROME 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, 
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and other educational entities) for the collection, analysis, 
and reporting of data on Down syndrome. In making such 
awards, the Secretary may provide direct technical assist-
ance, including personnel support, in lieu of cash. 
‘‘(b) NATIONAL DOWN SYNDROME EPIDEMIOLOGY 
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 Down 
syndrome, including collecting and analyzing infor-
mation on the number, incidence, correlates, and 
symptoms of cases and the clinical utility (including 
costs and benefits) of specific practice patterns. In 
making such awards, the Secretary may provide di-
rect technical assistance, including personnel sup-
port, in lieu of cash. 
‘‘(2) NATIONAL SURVEILLANCE PROGRAM.—In 
carrying out subsection (a), the Secretary shall— 
‘‘(A) provide for a national surveillance 
program; and 
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‘‘(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. REPORT TO CONGRESS. 
Not later than January 1, 2012, and each January 
1 thereafter, the Secretary of Health and Human Services 
shall prepare and submit to the appropriate committees 
of the Congress a report concerning the implementation 
of this Act and the amendments made by this Act. 
Æ 
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