I 
118TH CONGRESS 
2D SESSION 
H. R. 7406 
To amend the Public Health Service Act to authorize the Secretary of Health 
and Human Services to carry out a program of research, training, 
and investigation related to Down syndrome, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 16, 2024 
Mrs. RODGERS of Washington (for herself, Ms. DEGETTE, Mr. COLE, Ms. 
NORTON, Ms. DELAURO, and Mr. STAUBER) introduced the following 
bill; which was referred to the Committee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to authorize the 
Secretary of Health and Human Services to carry out 
a program of research, training, and investigation related 
to Down syndrome, and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘DeOndra Dixon IN-
CLUDE Project Act of 2024’’. 
SEC. 2. FINDINGS. 
The Congress finds the following: 
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(1) Down syndrome is the most common chro-
mosomal disorder. Each year, about 6,000 babies 
born in the United States have Down syndrome, af-
fecting about 1 in every 700 babies born. 
(2) Individuals with Down syndrome have a full 
or partial extra copy of chromosome 21 that leads 
to certain physical, intellectual, and developmental 
challenges. 
(3) Life expectancy of individuals with Down 
syndrome in the United States has increased dra-
matically in recent decades. In 1960, the average life 
expectancy was about 10 years. Today, the average 
life expectancy of an individual with Down syndrome 
is nearly 60 years. 
(4) Individuals with Down syndrome can attend 
school, work, make their own life decisions, have 
meaningful relationships, vote, and contribute to so-
ciety. 
(5) Individuals with Down syndrome are at an 
increased risk for certain medical conditions, such as 
autoimmune disorders, leukemia, congenital heart 
disease, sleep dysfunction, and Alzheimer’s disease, 
but may be at a decreased risk for other conditions. 
(6) Research and medical care supporting indi-
viduals with Down syndrome and their unique dis-
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ease profile will improve health outcomes and may 
potentially lead to treatments for individuals born 
with or without Down syndrome who suffer from 
diseases associated with that unique profile. 
SEC. 3. DOWN SYNDROME RESEARCH. 
Part A of title IV of the Public Health Service Act 
(42 U.S.C. 281 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 404P. DOWN SYNDROM RESEARCH. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Office of the Director of NIH, and in consultation with 
other Federal agencies and partners, shall carry out, di-
rectly or through grants or contracts, a program of re-
search, training, and investigation related to Down syn-
drome to be known as the INvestigation of Co-occurring 
conditions across the Lifespan to Understand Down syn-
dromE Project or the INCLUDE Project. 
‘‘(b) PROGRAM ELEMENTS.—The program under 
subsection (a) shall include research, training, and inves-
tigation related to— 
‘‘(1) high-risk, high reward basic science studies 
of the effects of chromosome 21 on human develop-
ment and health; 
‘‘(2) assembling and maintaining a large study 
population of individuals with Down syndrome; 
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‘‘(3) expanding the number of clinical trials 
that are inclusive of, or expressly for, individuals 
with Down syndrome, including novel biomedical and 
pharmacological interventions and other therapies 
designed to promote or enhance activities of daily 
living; 
‘‘(4) the biological mechanisms in individuals 
with Down syndrome responsible for structural and 
functional anomalies in cells, tissues, and organs, 
cognitive and behavioral dysfunction, and stunted 
growth; 
‘‘(5) the identification of biomarkers for the de-
tection of risk factors, diagnosis, and customized 
interventions and treatments for conditions co-occur-
ring with Down syndrome; 
‘‘(6) why several co-occurring conditions, such 
as Alzheimer’s Disease and autoimmunity, are prev-
alent in individuals with Down syndrome and how 
such conditions can be treated concurrently with 
Down syndrome; and 
‘‘(7) improving the quality of life of individuals 
with Down syndrome and their families. 
‘‘(c) COORDINATION; PRIORITIZING NONDUPLICA-
TIVE RESEARCH.—The Secretary shall ensure that— 
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‘‘(1) the programs and activities of the insti-
tutes, centers, agencies, and offices of the National 
Institutes of Health relating to Down Syndrome and 
co-occurring conditions are coordinated, including 
through the Division of Program Coordination, 
Planning, and Strategic Initiatives under sections 
402(b)(7) and 402A(c); and 
‘‘(2) such institutes, centers, agencies, and of-
fices prioritize, as appropriate, Down syndrome re-
search that does not duplicate existing research ac-
tivities of the National Institutes of Health. 
‘‘(d) TECHNICAL ASSISTANCE.—The Secretary shall 
provide technical assistance to grantees and other involved 
entities, as appropriate, for carrying out activities pursu-
ant to this section. 
‘‘(e) BIENNIAL REPORTS TO CONGRESS.— 
‘‘(1) IN GENERAL.—The Secretary shall submit, 
on a biennial basis, to the Committee on Energy and 
Commerce and the Subcommittee on Labor, Health 
and Human Services, Education of the Committee 
on Appropriations of the House of Representatives 
and the Committee on Health, Education, Labor, 
and Pensions and the Subcommittee on Labor, 
Health and Human Services, Education, and Re-
lated Agencies of the Committee on Appropriations 
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of the Senate, a report that catalogs the research 
conducted or supported under this section. 
‘‘(2) CONTENTS.—Each report under para-
graph (1) shall include— 
‘‘(A) identification of the institute, center, 
agency, office, or entity involved; 
‘‘(B) a statement of whether the research 
is or was being carried out directly by the insti-
tute, center, agency, office, or entity or by mul-
tiple institutes, centers, agencies, offices, or en-
tities; and 
‘‘(C) identification of any resulting real 
world evidence that is or may be used for clin-
ical research and medical care for patients with 
Down syndrome. 
‘‘(f) AUTHORIZATION OF APPROPRIATIONS.— 
‘‘(1) IN GENERAL.—To carry out this section, 
there is authorized to be appropriated $250,000,000 
for each of fiscal years 2025 through 2030. 
‘‘(2) SUPPLEMENT, NOT
SUPPLANT.—Funds 
appropriated to carry out this section shall be used 
to supplement, not supplant, other funds allocated 
by the National Institutes of Health for research 
and other activities relating to Down syndrome.’’. 
Æ 
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