‘‘(2) REQUIREMENTS.—The National Down 
Syndrome Patient Registry and Biobank— 
‘‘(A) shall be used, building upon the 
multi-disease bank of brain and other tissue of 
the National Institute of Child Health and 
Human Development— 
‘‘(i) to establish a centralized or dis-
tributed brain, cell, tissue, DNA, and RNA 
bank; 
‘‘(ii) to well-characterize a cohort of 
patients for genotype-phenotype investiga-
tions to inter-operate with the bank; and 
‘‘(iii) to correlate the nature and se-
verity of cognitive deficits and age of onset 
and severity of dementia; 
‘‘(B) shall be used as a resource to prepare 
therapies and treatments for clinical trials of 
ongoing treatments for individuals with Down 
syndrome, including the encouragement to in-
clude participants with Down syndrome in Na-
tional Institutes of Health-funded clinical trials; 
and 
‘‘(C) shall include the collection and anal-
ysis of longitudinal data related to individuals 
of all ages with Down syndrome, including in-
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fants, young children, adolescents, and adults of 
all ages including older Americans. 
‘‘(d) CENTERS OF EXCELLENCE.— 
‘‘(1) COOPERATIVE AGREEMENTS.—In carrying 
out this section, the Secretary shall enter into coop-
erative agreements with an eligible national organi-
zation, a patient advocacy organization, and appro-
priate academic health institutions to develop, imple-
ment, and manage Down Syndrome Centers of Ex-
cellence for the purpose of— 
‘‘(A) providing clinical care for patients 
with Down syndrome; 
‘‘(B) coordinating research and clinical ac-
tivities with the activities of the National Down 
Syndrome Registry and Biobank; and 
‘‘(C) participating in a system for Down 
syndrome patient data collection and analysis, 
including the creation and use of a common 
data entry and management system. 
‘‘(2) ELIGIBLE NATIONAL ORGANIZATION.—In 
this subsection, the term ‘eligible national organiza-
tion’ means a national organization that— 
‘‘(A) has expertise in the epidemiology of 
Down syndrome; and 
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‘‘(B) has the capacity to maintain a pa-
tient registry or Biobank. 
‘‘(e) ADVISORY COMMITTEE.— 
‘‘(1) ESTABLISHMENT.—Not later than 90 days 
after the date of the enactment of this section, the 
Secretary, acting through the Director of the Cen-
ters for Disease Control and Prevention, shall estab-
lish a committee to be known as the Advisory Com-
mittee on the National Down Syndrome Registry 
and Biobank (referred to in this section as the ‘Ad-
visory Committee’). 
‘‘(2) MEMBERSHIP.—The Advisory Committee 
shall be composed of at least one member, to be ap-
pointed by the Secretary, acting through the Direc-
tor of the Centers for Disease Control and Preven-
tion, representing each of the following: 
‘‘(A) National voluntary health associa-
tions that focus solely on Down syndrome and 
have demonstrated experience in Down syn-
drome research, care, and patient services. 
‘‘(B) The National Institutes of Health, to 
include, upon the recommendation of the Direc-
tor of the National Institutes of Health, rep-
resentatives from the Directors of the National 
Institute of Child Health and Human Develop-
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ment, National Heart, Lung, and Blood Insti-
tute, National Institute of Allergy and Infec-
tious Diseases, National Institute of Neuro-
logical Disorders and Stroke, National Cancer 
Institute, National Institute on Aging, and Na-
tional Institute of Mental Health. 
‘‘(C) The Agency for Toxic Substances and 
Disease Registry. 
‘‘(D) The Centers for Disease Control and 
Prevention. 
‘‘(E) Down Syndrome Centers of Excel-
lence developed under subsection (d). 
‘‘(F) Individuals with Down syndrome and, 
for the sole purpose of supporting such individ-
uals, their family members. 
‘‘(G) Clinicians with expertise on Down 
syndrome. 
‘‘(H) Epidemiologists with experience in 
data registries. 
‘‘(I) Geneticists or experts in genetics who 
have experience with the genetics of Down syn-
drome. 
‘‘(J) Statisticians. 
‘‘(K) Ethicists. 
‘‘(L) Attorneys. 
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‘‘(M) Researchers with expertise on Down 
syndrome. 
‘‘(N) Research scientists with experience 
conducting translational research or creating 
systems that support translating basic discov-
eries into treatments. 
‘‘(O) Experts in additional neurological 
diseases, as appropriate, based on development 
and implementation of national surveillance sys-
tems for other neurological diseases and dis-
orders. 
‘‘(P) Other individuals with an interest in 
developing and maintaining the National Down 
Syndrome Registry and Biobank. 
For purposes of this paragraph, the Secretary may 
appoint a member to represent more than one cat-
egory described in subparagraphs (A) through (P). 
‘‘(3) DUTIES.—The Advisory Committee shall 
review and make recommendations to the Secretary 
concerning— 
‘‘(A) the establishment, operation, and 
maintenance of the National Down Syndrome 
Registry and Biobank; 
‘‘(B) the type of information to be col-
lected and stored in the Registry and Biobank; 
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