[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. 1838 Introduced in Senate (IS)]
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119th CONGRESS
1st Session
S. 1838
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 SENATE OF THE UNITED STATES
May 21, 2025
Mr. Hickenlooper (for himself, Mr. Moran, Mr. Booker, and Mr. Mullin)
introduced the following bill; which was read twice and referred to the
Committee on Health, Education, Labor, and Pensions
_______________________________________________________________________
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 Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``DeOndra Dixon INCLUDE Project Act of
2025''.
SEC. 2. FINDINGS.
Congress finds the following:
(1) Down syndrome is the most common chromosomal disorder.
Each year, about 6,000 babies born in the United States have
Down syndrome, affecting 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 dramatically 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 society.
(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 individuals with
Down syndrome and their unique disease 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 SYNDROME 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, directly or through grants or contracts, a
program of research, training, and investigation related to Down
syndrome to be known as the INvestigation of Co-occurring conditions
across the Lifespan to Understand Down syndromE Project or the INCLUDE
Project.
``(b) Program Elements.--The program under subsection (a) shall
include research, training, and investigation related to--
``(1) high-risk, high reward basic science studies of the
effects of chromosome 21 on human development and health;
``(2) assembling and maintaining a large study population
of individuals with Down syndrome;
``(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 detection of
risk factors, diagnosis, and customized interventions and
treatments for conditions co-occurring with Down syndrome;
``(6) why several co-occurring conditions, such as
Alzheimer's disease and autoimmunity, are prevalent 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 Nonduplicative Research.--The
Secretary shall ensure that--
``(1) the programs and activities of the institutes,
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 offices
prioritize, as appropriate, Down syndrome research that does
not duplicate existing research activities 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 pursuant 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,
and Related Agencies 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 Related Agencies of
the Committee on Appropriations of the Senate, a report that
catalogs the research conducted or supported under this
section.
``(2) Contents.--Each report under paragraph (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 institute, center,
agency, office, or entity or by multiple institutes,
centers, agencies, offices, or entities; and
``(C) identification of any resulting real world
evidence that is or may be used for clinical research
and medical care for patients with Down syndrome.''.
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