Technical corrections only. The only change between v3 and v4 is the addition of the Clerk's name, "KEVIN F. MCCUMBER," in the attestation line. There are no substantive policy changes in the bill text.
DeOndra Dixon INCLUDE Project Act of 2025
- Sponsor
- Rep. DeGette, Diana [D-CO-1]
- Committees
- Energy and Commerce Committee (primary)
- Last action
- Jul 21, 2026
Bottom line
The bill creates a dedicated and coordinated NIH research program focused on Down syndrome, including co-occurring conditions and quality of life, with provisions for stakeholder input and regular reporting to Congress.
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 authorizes the Director of NIH to conduct and support research, training, and investigation related to Down syndrome, covering a wide range of topics from basic biological mechanisms to clinical trials and improving quality of life for individuals with Down syndrome and their families. The bill mandates coordination among NIH institutes and centers, prioritization of non-duplicative research, stakeholder consultation, and biennial reports to Congress.
Proponents argue
Supporters argue that this legislation is crucial for advancing scientific understanding of Down syndrome and its associated health challenges, such as Alzheimer's disease and autoimmune conditions. They contend that a coordinated, dedicated research effort, as outlined in the INCLUDE Project, will lead to improved diagnostics, treatments, and ultimately enhance the quality of life for individuals with Down syndrome and their families by addressing unmet medical needs.
Opponents contend
No specific opposition is typically raised against legislation focused on medical research for conditions like Down syndrome. General concerns might be raised by some about overall federal spending priorities or the potential for research duplication, though the bill explicitly addresses the latter by requiring prioritization of non-duplicative research.
The bill is very short and clearly written, making it highly accessible for a quick and comprehensive review by any interested reader.
Section 2, adding Section 409K to the Public Health Service Act
Establishment of the DeOndra Dixon INCLUDE Project for Down Syndrome Research
This provision amends the Public Health Service Act to create a new program at the National Institutes of Health (NIH) specifically for Down syndrome research, named the 'INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project' (INCLUDE Project). The program will cover high-risk research on trisomy 21, promote lifespan research including cohort studies and new interventions, expand clinical trials, investigate biological mechanisms, improve diagnosis and treatment of co-occurring conditions (like Alzheimer's), and support research to enhance the quality of life for individuals with Down syndrome and their families.
Supporters argue
Proponents argue that establishing a dedicated and comprehensive research project like INCLUDE is essential to accelerate scientific discovery, address the complex health needs of individuals with Down syndrome across their lifespan, and translate research into tangible improvements in care and quality of life. They highlight the importance of focusing on co-occurring conditions and fostering a coordinated approach.
Critics contend
No specific opposition is typically raised against direct medical research funding for conditions like Down syndrome. Any general concerns would likely relate to the allocation of federal resources rather than the specific goals of this research.
Tradeoffs
The primary tension involves ensuring that the broad mandate for research across various aspects of Down syndrome is effectively managed and prioritized within the NIH's existing research portfolio. There is a need to balance basic science with clinical application and quality of life improvements, while also ensuring efficient use of resources and avoiding duplication of efforts.