2 versions

SubstantiveWhat changed in ENGROSSED IN SENATEcompared with INTRODUCED IN SENATE (May 21, 2025)

A substantive revision to the DeOndra Dixon INCLUDE Project Act, v2 updates the short title year and streamlines the program's authority by shifting it from the Secretary of Health and Human Services to the Director of NIH. It also removes the findings section and technical assistance provision, while adding a new requirement for stakeholder consultation.

S. 1838119th CongressIntroduced May 21, 2025

DeOndra Dixon INCLUDE Project Act of 2026

Passed SenateHealthSubstantive

View bill text

Sponsor: Sen. Hickenlooper, John W. [D-CO]
Committees: Health, Education, Labor, and Pensions Committee (primary)
Last action: Aug 10, 2026

Bottom line

This bill creates a dedicated and coordinated research program at the National Institutes of Health to advance the understanding, diagnosis, and treatment of Down syndrome and its associated health conditions across the lifespan.

What it actually does

This bill establishes the "INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project" (INCLUDE Project) within the National Institutes of Health (NIH). It mandates a comprehensive program of research, training, and investigation related to Down syndrome, focusing on areas such as high-risk research, cohort studies, clinical trials, biological mechanisms, diagnosis and treatment of co-occurring conditions (e.g., Alzheimer's, autoimmunity), and improving quality of life. The bill also requires coordination among NIH institutes, prioritization of non-duplicative research, consultation with stakeholders, and biennial reports to Congress.

Proponents argue

Supporters argue that this bill addresses a critical need for focused and comprehensive research into Down syndrome, which often receives less dedicated funding compared to other conditions. They emphasize the importance of understanding co-occurring conditions like Alzheimer's disease and autoimmunity, which disproportionately affect individuals with Down syndrome, and improving quality of life through targeted interventions and therapies. The coordination and non-duplication mandates ensure efficient use of federal research resources.

Opponents contend

No specific organized opposition is typically raised against bills that authorize medical research for specific conditions, especially those with broad public support. Potential general concerns, if any, might revolve around the allocation of federal research dollars to specific diseases versus broad, investigator-initiated research, or the potential for mission creep within NIH, but these are not direct opposition to the bill's core intent.

The bill is very short and clearly written, making it highly accessible for any reader to understand its provisions and purpose.

Section 2, amending Part B of title IV of the Public Health Service Act, adding Section 409K(a).

Establishment of the DeOndra Dixon INCLUDE Project for Down Syndrome Research

prominently featuredstraightforward

This provision formally establishes a new program within the National Institutes of Health (NIH) called the "INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project" (INCLUDE Project). The Director of NIH is tasked with carrying out this program, which will focus on research, training, and investigation specifically related to Down syndrome.

GroupImpactMechanismScale

GroupIndividuals with Down syndrome and their familiesImpactPotential for improved understanding, diagnosis, and treatment of Down syndrome and related conditions.MechanismDedicated federal research program.ScaleNational, long-term.

GroupMedical researchers and institutionsImpactNew funding opportunities and research directives.MechanismFederal grants and programs.ScaleNational.

Supporters argue

Supporters argue that establishing a named, dedicated project like INCLUDE provides a clear mandate and focus for NIH research efforts on Down syndrome, ensuring consistent attention and resource allocation to this often-understudied area.

Critics contend

No specific opposition is typically raised against establishing dedicated research programs for specific conditions, especially those with broad public support.

Tradeoffs

The primary tension, if any, is the balance between dedicated disease-specific research programs and broad, investigator-initiated research funding. However, this bill aims to fill a perceived gap rather than divert existing funds.

Section 2, amending Part B of title IV of the Public Health Service Act, adding Section 409K(b).

Specific Research Areas and Activities for the INCLUDE Project

prominently featuredstraightforward

This section outlines seven specific areas of focus for the INCLUDE Project. These include high-risk, high-reward research on trisomy 21 effects, promoting lifespan research (including cohort studies and new interventions), expanding clinical trials for Down syndrome participants, investigating biological mechanisms of anomalies and stunted growth, improving diagnosis and treatment of co-occurring conditions (like Alzheimer's, dementias, and autoimmunity), and research aimed at improving the quality of life for individuals with Down syndrome and their families.

Section 2, amending Part B of title IV of the Public Health Service Act, adding Section 409K(c) and (d).

Ensuring Efficient and Responsive Down Syndrome Research

mentioned in summarystraightforward

This provision mandates that the Director of NIH coordinate all Down syndrome-related programs and activities across its various institutes and centers, including through the Office of the Director. It also requires prioritizing research that does not duplicate existing NIH activities. Furthermore, the Director must consult with relevant stakeholders, such as patient advocates, to ensure the research activities consider the needs of individuals with Down syndrome.

About this analysis. AI-Generated from the official bill text and available committee reports. Gaps in available data are noted explicitly. Verify important details with the official Congress.gov record.

SubstantiveWhat changed in ENGROSSED IN SENATEcompared with INTRODUCED IN SENATE (May 21, 2025)

See full diff

S. 1838119th CongressIntroduced May 21, 2025

DeOndra Dixon INCLUDE Project Act of 2026

Passed SenateHealthSubstantive

View bill text

Sponsor: Sen. Hickenlooper, John W. [D-CO]
Committees: Health, Education, Labor, and Pensions Committee (primary)
Last action: Aug 10, 2026

Bottom line

What it actually does

Proponents argue

Opponents contend

The bill is very short and clearly written, making it highly accessible for any reader to understand its provisions and purpose.

Section 2, amending Part B of title IV of the Public Health Service Act, adding Section 409K(a).

Establishment of the DeOndra Dixon INCLUDE Project for Down Syndrome Research

prominently featuredstraightforward

GroupImpactMechanismScale

GroupMedical researchers and institutionsImpactNew funding opportunities and research directives.MechanismFederal grants and programs.ScaleNational.

Supporters argue

Critics contend

No specific opposition is typically raised against establishing dedicated research programs for specific conditions, especially those with broad public support.

Tradeoffs

Section 2, amending Part B of title IV of the Public Health Service Act, adding Section 409K(b).

Specific Research Areas and Activities for the INCLUDE Project

prominently featuredstraightforward

Section 2, amending Part B of title IV of the Public Health Service Act, adding Section 409K(c) and (d).

Ensuring Efficient and Responsive Down Syndrome Research

mentioned in summarystraightforward