119-s1838

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. 1838 Introduced in Senate

    (IS) ]

<DOC>

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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