individuals aware of opportunities to participate 
as subjects in research conducted by the cen-
ters. 
‘‘(B) REFERRALS AND COSTS.—A program 
under subparagraph (A) shall, in accordance 
with such criteria as the Director may establish, 
provide to the subjects described in such sub-
paragraph referrals for health and other serv-
ices and such patient care costs as are required 
for research. 
‘‘(C) 
AVAILABILITY
AND
ACCESS.—In 
awarding grants under this section, the Direc-
tor of NIH shall require the applicant to dem-
onstrate, and shall take into consideration, the 
availability of and access to health and medical 
services described in subparagraph (B). 
‘‘(4) TRAINING PROGRAM FOR CLINICIAN AND 
SCIENTISTS.—Each center under paragraph (1) shall 
establish or expand training programs for medical 
and allied health clinicians and scientists in research 
relevant to Down syndrome. 
‘‘(5) COORDINATION OF CENTERS; REPORTS.— 
The Director of NIH shall— 
‘‘(A) provide for the coordination of infor-
mation sharing among the centers under para-
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graph (1) and ensure regular communication 
among such centers; and 
‘‘(B) require the centers to submit periodic 
reports to the Director on their activities. 
‘‘(6) ORGANIZATION OF CENTERS.—Each cen-
ter under paragraph (1) shall use the facilities of a 
single institution meeting such requirements as may 
be prescribed by the Director of NIH, be formed 
from a consortium or network of such institutions, 
or both. 
‘‘(7) DURATION OF SUPPORT.— 
‘‘(A) IN
GENERAL.—Subject to subpara-
graph (B), the Director of NIH may not pro-
vide support to a center established under para-
graph (1) for a period of more than 5 years. 
‘‘(B) EXTENSION.—The period referred to 
in subparagraph (A) may be extended for 1 or 
more additional periods not exceeding 5 years 
if— 
‘‘(i) the operations of the center have 
been reviewed by an appropriate technical 
and scientific peer review group established 
by the Director of NIH; and 
‘‘(ii) such group has recommended to 
the Director that such period be extended. 
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‘‘(c) FACILITATION
AND COORDINATION
OF RE-
SEARCH.—The Director of NIH shall, in coordination of 
the National Down Syndrome Patient Registry and 
Biobank established under section 317U, provide for a 
program under subsection (a)(1) under which samples of 
tissues and genetic materials that are of use in research 
on Down syndrome are donated, collected, preserved, and 
made available for such research. The program shall— 
‘‘(1) be carried out in accordance with accepted 
scientific and medical standards for the donation, 
collection, and preservation of such samples; and 
‘‘(2) be linked with the National Down Syn-
drome Patient Registry and Biobank established 
under section 317U to allow for systematic searches 
of information. 
‘‘(d) COORDINATING COMMITTEE.— 
‘‘(1) IN GENERAL.—The Secretary shall estab-
lish the Down Syndrome Coordinating Committee 
(referred to in this section as the ‘Coordinating 
Committee’) to coordinate activities across the Na-
tional Institutes of Health and with other Federal 
health programs and activities relating to Down syn-
drome. 
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‘‘(2) COMPOSITION.—The Coordinating Com-
mittee shall consist of not more than 15 members, 
of which— 
‘‘(A) 2⁄3 of such members shall represent 
governmental agencies, including— 
‘‘(i) the directors or their designees of 
each of the national research institutes in-
volved in research with respect to Down 
syndrome; 
‘‘(ii) representatives of all other Fed-
eral departments and agencies whose pro-
grams involve health functions or respon-
sibilities relevant to such diseases, includ-
ing the Centers for Disease Control and 
Prevention, the Health Resources and 
Services Administration, and the Food and 
Drug Administration; and 
‘‘(iii) representatives of other govern-
mental agencies that serve children and 
adults with Down syndrome, such as the 
Department of Education, the Department 
of Labor, and the Department of Housing 
and Urban Development; and 
‘‘(B) 1⁄3 of such members shall be public 
members, including a broad cross section of 
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persons with Down syndrome, parents or legal 
guardians of persons with Down syndrome, re-
searchers, and clinicians. 
‘‘(3) APPOINTMENT; TERMS.— 
‘‘(A) IN GENERAL.—The Secretary, in con-
sultation with Down syndrome stakeholder or-
ganizations, shall appoint the members of the 
Coordinating Committee. 
‘‘(B) PUBLIC MEMBERS.—Members of the 
Coordinating Committee appointed under para-
graph (2)(B) shall be appointed for a term of 
3 years, and may serve for an unlimited num-
ber of terms if reappointed. At least two such 
public members shall be persons who are ac-
tively engaged in research or clinical practice on 
Down syndrome. At least one such public mem-
ber shall be a person with Down syndrome, and 
an additional, non-voting member, whose sole 
role shall be to support the member with Down 
syndrome, shall be identified with direct input 
from the member with Down syndrome. 
‘‘(4) CHAIR.— 
‘‘(A) DUTIES.—With respect to Down syn-
drome, the Chair of the Coordinating Com-
mittee shall— 
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‘‘(i) serve as the principal advisor to 
the Secretary, the Assistant Secretary for 
Health, and the Director of NIH; and 
‘‘(ii) provide advice to the Director of 
the Centers for Disease Control and Pre-
vention, the Commissioner of Food and 
Drugs, and to the heads of other relevant 
agencies. 
‘‘(B) APPOINTMENT; TERM.—The Chair of 
the Coordinating Committee— 
‘‘(i) shall be selected by the Coordi-
nating Committee from among its mem-
bers; and 
‘‘(ii) shall be selected to serve a term 
not to exceed 2 years. 
‘‘(5) ADMINISTRATIVE
SUPPORT.—The Sec-
retary of Health and Human Services shall provide, 
or arrange for an appropriate office or agency of the 
Department of Health and Human Services to pro-
vide, necessary and appropriate administrative sup-
port to the Coordinating Committee. 
‘‘(6) MEETINGS.—The Coordinating Committee 
shall meet as appropriate, as determined by the Sec-
retary in consultation with the Chair of the Coordi-
nating Committee. 
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‘‘(e) PLAN FOR HHS ACTIVITIES.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
the date of enactment of this section, the Coordi-
nating Committee shall develop a plan for con-
ducting and supporting research and education on 
Down syndrome through the national research insti-
tutes and shall periodically review and revise the 
plan. The plan shall— 
‘‘(A) provide for a broad range of research 
and education activities relating to biomedical, 
epidemiological, public perception, psychosocial, 
and rehabilitative issues, including studies of 
the impact of such conditions in rural and un-
derserved communities; 
‘‘(B) identify priorities among the pro-
grams and activities of the National Institutes 
of Health regarding such conditions; and 
‘‘(C) reflect input from a broad range of 
scientists, patients, and advocacy groups. 
‘‘(2) CERTAIN ELEMENTS OF PLAN.—The plan 
under paragraph (1) shall, with respect to Down 
syndrome, provide for the following as appropriate: 
‘‘(A) Basic research concerning the eti-
ology and genetic contributions to the potential 
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causes and consequences of the chromosomal 
disorder. 
‘‘(B) Basic and clinical research for the de-
velopment and evaluation of new treatments, in-
cluding new biological agents. 
‘‘(C) Specific programs for identifying po-
tential therapeutic agents and moving them into 
clinical trials in a timely manner. 
‘‘(D) Research to determine the reasons 
underlying the incidence and prevalence of var-
ious forms of Down syndrome. 
‘‘(E) Information and education programs 
for health care professionals and the public. 
‘‘(f) REPORTS
TO CONGRESS.—The Coordinating 
Committee shall biennially submit to the Committee on 
Energy and Commerce of the House of Representatives 
and the Committee on Health, Education, Labor, and 
Pensions of the Senate a report that describes the re-
search, education, and other activities on Down syndrome 
being conducted or supported through the Department of 
Health and Human Services. Each such report shall in-
clude the following: 
‘‘(1) The plan under subsection (e)(1) (or revi-
sions to the plan, as the case may be). 
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‘‘(2) Provisions specifying the amounts ex-
pended by the Department of Health and Human 
Services with respect to Down syndrome. 
‘‘(3) Provisions identifying particular projects 
or types of projects that should in the future be con-
sidered by the national research institutes or other 
entities in the field of research on Down syndrome. 
‘‘(g) PUBLIC INPUT.—The Secretary shall, under 
subsection (a)(1), provide for a means through which the 
public can obtain information on the existing and planned 
programs and activities of the Department of Health and 
Human Services with respect to Down syndrome and 
through which the Secretary can receive comments from 
the public regarding such programs and activities. 
‘‘(h) DEFINITION.—The term ‘translational research’ 
means rigorous, evidence-based basic or clinical research 
with an emphasis on accelerating the development and de-
livery of effective new therapies to patients. 
‘‘(i) AUTHORIZATION OF APPROPRIATIONS.—For the 
purpose of carrying out this section, there are authorized 
to be appropriated such sums as may be necessary for 
each of fiscal years 2011 through 2015. The authorization 
of appropriations established in the preceding sentence is 
in addition to any other authorization of appropriations 
that is available for conducting or supporting through the 
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National Institutes of Health research and other activities 
with respect to Down syndrome.’’. 
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, 
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 
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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 
‘‘(B) where possible, ensure that the sur-
veillance program is coordinated with the data 
and sample collection activities of the National 
Down Syndrome Patient Registry and Biobank. 
‘‘(c) NATIONAL DOWN SYNDROME PATIENT REG-
ISTRY AND BIOBANK.— 
‘‘(1) IN
GENERAL.—The Secretary, acting 
through the Director of the Centers for Disease 
Control and Prevention and in collaboration with an 
eligible national organization and patient advocacy 
organization, shall establish a National Down Syn-
drome Patient Registry and Biobank. 
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