IIB 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 


ssavage on LAPJG3WLY3PROD with BILLS
2 

HR 7406 RFS

1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘DeOndra Dixon IN3 CLUDE Project Act of 2024’’. 

4 SEC. 2. DOWN SYNDROME RESEARCH. 

5 Part A of title IV of the Public Health Service Act 

6 (42 U.S.C. 281 et seq.) is amended by adding at the end 

7 the following: 

8 ‘‘SEC. 404P. DOWN SYNDROME RESEARCH. 

9 ‘‘(a) IN GENERAL.—The Secretary, acting through 

10 the Office of the Director of NIH, and in consultation with 

11 other Federal agencies and partners, shall carry out a pro12 gram of research, training, and investigation related to 

13 Down syndrome to be known as the ‘INvestigation of Co14 occurring conditions across the Lifespan to Understand 

15 Down syndromE Project’ or the ‘INCLUDE Project’. 

16 ‘‘(b) PROGRAM ELEMENTS.—The program under 

17 subsection (a) shall include research, training, and inves18 tigation related to— 

19 ‘‘(1) high-risk, high reward basic science studies 

20 of the effects of chromosome 21 on human develop21 ment and health; 

22 ‘‘(2) assembling and maintaining a large study 

23 population of individuals with Down syndrome; 

24 ‘‘(3) expanding the number of clinical trials 

25 that are inclusive of, or expressly for, individuals 

26 with Down syndrome, including novel biomedical and 


ssavage on LAPJG3WLY3PROD with BILLS
3 

HR 7406 RFS

1 pharmacological interventions and other therapies 

2 designed to promote or enhance activities of daily 

3 living; 

4 ‘‘(4) the biological mechanisms in individuals 

5 with Down syndrome responsible for structural and 

6 functional anomalies in cells, tissues, and organs, 

7 cognitive and behavioral dysfunction, and stunted 

8 growth; 

9 ‘‘(5) the identification of biomarkers for the de10 tection of risk factors, diagnosis, and customized 

11 interventions and treatments for conditions co-occur12 ring with Down syndrome; 

13 ‘‘(6) why several co-occurring conditions, such 

14 as Alzheimer’s Disease and autoimmunity, are prev15 alent in individuals with Down syndrome and how 

16 such conditions can be treated concurrently with 

17 Down syndrome; and 

18 ‘‘(7) improving the quality of life of individuals 

19 with Down syndrome and their families. 

20 ‘‘(c) COORDINATION; PRIORITIZING NONDUPLICA21 TIVE RESEARCH.—The Secretary shall ensure that— 

22 ‘‘(1) the programs and activities of the insti23 tutes, centers, agencies, and offices of the National 

24 Institutes of Health relating to Down Syndrome and 

25 co-occurring conditions are coordinated, including 


ssavage on LAPJG3WLY3PROD with BILLS
4 

HR 7406 RFS

1 through the Division of Program Coordination, 

2 Planning, and Strategic Initiatives under sections 

3 402(b)(7) and 402A(c); and 

4 ‘‘(2) such institutes, centers, agencies, and of5 fices prioritize, as appropriate, Down syndrome re6 search that does not duplicate existing research ac7 tivities of the National Institutes of Health. 

8 ‘‘(d) TECHNICAL ASSISTANCE.—The Secretary shall 

9 provide technical assistance to grantees and other involved 

10 entities, as appropriate, for carrying out activities pursu11 ant to this section. 

12 ‘‘(e) BIENNIAL REPORTS TO CONGRESS.— 

13 ‘‘(1) IN GENERAL.—The Secretary shall submit, 

14 on a biennial basis, to the Committee on Energy and 

15 Commerce and the Subcommittee on Labor, Health 

16 and Human Services, Education of the Committee 

17 on Appropriations of the House of Representatives 

18 and the Committee on Health, Education, Labor, 

19 and Pensions and the Subcommittee on Labor, 

20 Health and Human Services, Education, and Re21 lated Agencies of the Committee on Appropriations 

22 of the Senate, a report that catalogs the research 

23 conducted or supported under this section. 

24 ‘‘(2) CONTENTS.—Each report under para25 graph (1) shall include— 


ssavage on LAPJG3WLY3PROD with BILLS
5 

HR 7406 RFS

1 ‘‘(A) identification of the institute, center, 

2 agency, office, or entity involved; 

3 ‘‘(B) a statement of whether the research 

4 is or was being carried out directly by the insti5 tute, center, agency, office, or entity or by mul6 tiple institutes, centers, agencies, offices, or en7 tities; and 

8 ‘‘(C) identification of any resulting real 

9 world evidence that is or may be used for clin10 ical research and medical care for patients with 

11 Down syndrome. 

12 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.— 

13 ‘‘(1) IN GENERAL.—To carry out this section, 

14 there is authorized to be appropriated $90,000,000 

15 for each of fiscal years 2025 through 2029. 

16 ‘‘(2) SUPPLEMENT, NOT SUPPLANT.—Funds 

17 appropriated to carry out this section shall be used 

18 to supplement, not supplant, other funds allocated 

19 by the National Institutes of Health for research 

20 and other activities relating to Down syndrome.’’. 

Passed the House of Representatives September 17, 

2024. 

Attest: KEVIN F. MCCUMBER, 

Clerk. 


ssavage on LAPJG3WLY3PROD with BILLS