DeOndra Dixon INCLUDE Project Act of 2026

[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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