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DeOndra Dixon INCLUDE Project Act of 2025
Summary
- Establishes the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project) within the National Institutes of Health to conduct research on Down syndrome.
- Directs research on high-risk topics including effects of trisomy 21, clinical trials for Down syndrome participants, biological mechanisms, and co-occurring conditions such as Alzheimer's disease and autoimmunity.
- Requires the NIH to expand clinical trials that include or are designed for people with Down syndrome, including new biomedical and pharmacological interventions to promote daily living activities.
- Requires the NIH to coordinate Down syndrome research across its institutes and centers and prioritize non-duplicative research efforts.
- Requires the Director of NIH to consult with patient advocates and stakeholders when carrying out research activities.
- Requires biennial reports to Congress documenting research conducted, which institutes and centers are involved, and any resulting real-world evidence for clinical applications.
AI-generated plain-language summary of the bill text — neutral, and may be imperfect. See the full text below for the exact wording.
Sponsor (1)
- Rep. DeGette, Diana [D-CO-1] (D-CO)
18 cosponsors
- Del. Norton, Eleanor Holmes [D-DC-At Large] (D-DC)
- Rep. Cole, Tom [R-OK-4] (R-OK)
- Rep. Craig, Angie [D-MN-2] (D-MN)
- Rep. Crow, Jason [D-CO-6] (D-CO)
- Rep. DeLauro, Rosa L. [D-CT-3] (D-CT)
- Rep. Hudson, Richard [R-NC-9] (R-NC)
- Rep. Kustoff, David [R-TN-8] (R-TN)
- Rep. Nadler, Jerrold [D-NY-12] (D-NY)
- Rep. Neguse, Joe [D-CO-2] (D-CO)
- Rep. Pettersen, Brittany [D-CO-7] (D-CO)
- Rep. Pocan, Mark [D-WI-2] (D-WI)
- Rep. Ross, Deborah K. [D-NC-2] (D-NC)
- Rep. Stauber, Pete [R-MN-8] (R-MN)
- Rep. Subramanyam, Suhas [D-VA-10] (D-VA)
- Rep. Tonko, Paul [D-NY-20] (D-NY)
- Rep. Wagner, Ann [R-MO-2] (R-MO)
- Rep. Walkinshaw, James R. [D-VA-11] (D-VA)
- Rep. Wittman, Robert J. [R-VA-1] (R-VA)
Money behind the sponsor
Top reported contributors to Diana Degette’s campaign committee (2024 cycle) — who funds the bill’s sponsor, not a claim about this bill. Data from FEC.
- DAVITA $13,800
- DISH NETWORK $13,200
- BROWNSTEIN $7,350
- KEBD ENTERPRISES LLC $6,600
- PRIME POLICY GROUP $6,600
Organizations whose employees gave the most — itemized individual contributions grouped by the donor’s reported employer (FEC Schedule A). Full finance for Diana Degette → · Outside spending →
Actions (13)
- Jul 21, 2026 Received in the Senate and Read twice and referred to the Committee on Health, Education, Labor, and Pensions. · senate
- Jul 20, 2026 Motion to reconsider laid on the table Agreed to without objection. · house
- Jul 20, 2026 On motion to suspend the rules and pass the bill Agreed to by voice vote. (text: CR H4649-4650) · house
- Jul 20, 2026 Passed/agreed to in House: On motion to suspend the rules and pass the bill Agreed to by voice vote. (text: CR H4649-4650)
- Jul 20, 2026 DEBATE - The House proceeded with forty minutes of debate on H.R. 3491. · house
- Jul 20, 2026 Considered under suspension of the rules. (consideration: CR H4649-4651) · house
- Jul 20, 2026 Mr. Guthrie moved to suspend the rules and pass the bill. · house
- Jul 2, 2026 Placed on the Union Calendar, Calendar No. 627. · house
- Jul 2, 2026 Reported by the Committee on Energy and Commerce. H. Rept. 119-722. · house
- May 21, 2026 Ordered to be Reported by the Yeas and Nays: 46 - 0. · house
- May 21, 2026 Committee Consideration and Mark-up Session Held · house
- May 19, 2025 Referred to the House Committee on Energy and Commerce. · house
- May 19, 2025 Introduced in House
More bills on these subjects (8)
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Similar bills (6)
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Text versions (4)
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Committee action
What happened to this bill in committee — the meetings where it was considered and every recorded vote taken on it.
Full text
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 2025”.
SEC. 2. DEONDRA DIXON INCLUDE PROJECT.
Part B of title IV of the Public Health Service Act (42 U.S.C. 284 et seq.) is amended by adding at the end the following:
“SEC. 409K. DOWN SYNDROME RESEARCH.
“(a) In General.—The Director of NIH 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—
“(1) high-risk, high-reward research on the effects of trisomy 21 on human development and health;
“(2) promoting research for participants with Down syndrome across the lifespan, including cohort studies to facilitate improved understanding of Down syndrome and co- occurring conditions and development of new interventions;
“(3) expanding the number of clinical trials that are inclusive of, or expressly for, participants with Down syndrome, including novel biomedical and pharmacological interventions and other therapies designed to promote or enhance activities of daily living;
“(4) research on the biological mechanisms in individuals with Down syndrome pertaining to structural, functional, and behavioral anomalies and dysfunction as well as stunted growth;
“(5) supporting research to improve diagnosis and treatment of conditions co-occurring with Down syndrome, including the identification of biomarkers related to risk factors, diagnosis, and clinical research and therapeutics;
“(6) research on the causes of increased prevalence, and concurrent treatment, of co-occurring conditions, such as Alzheimer’s disease and related dementias and autoimmunity, in individuals with Down syndrome; and
“(7) research, training, and investigation on improving the quality of life of individuals with Down syndrome and their families.
“(c) Coordination; Prioritizing Nonduplicative Research.—The Director of NIH shall ensure that—
“(1) the programs and activities of the institutes and centers of the National Institutes of Health relating to Down syndrome and co-occurring conditions are coordinated, including through the Office of the Director of NIH and priority-setting reviews conducted pursuant to section 402(b)(3); and
“(2) such institutes and centers, prioritize, as appropriate, Down syndrome research that does not duplicate existing research activities of the National Institutes of Health.
“(d) Consultation With Stakeholders.—In carrying out activities under this section, the Director of NIH shall, as appropriate and to the maximum extent feasible, consult with relevant stakeholders, including patient advocates, to ensure that such activities take into consideration the needs of individuals with Down syndrome.
“(e) Biennial Reports to Congress.—
“(1) In general.—The Director of NIH 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 or center involved;
“(B) a statement of whether the research is or was being carried out directly by such institute or center or by multiple institutes and centers; 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.”.
Passed the House of Representatives July 20, 2026.
Attest:
Clerk. 119th CONGRESS
2d Session
H. R. 3491
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.
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