[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 7406 Referred in Senate (RFS)]

<DOC>
118th CONGRESS
  2d Session
                                H. R. 7406


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           September 18, 2024

     Received; read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 AN ACT


 
 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 
2024''.

SEC. 2. 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 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 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.
    ``(f) Authorization of Appropriations.--
            ``(1) In general.--To carry out this section, there is 
        authorized to be appropriated $90,000,000 for each of fiscal 
        years 2025 through 2029.
            ``(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.''.

            Passed the House of Representatives September 17, 2024.

            Attest:

                                             KEVIN F. MCCUMBER,

                                                                 Clerk.