New Law Creates INCLUDE Project to Boost Down Syndrome Research, Funding Basic Science and Clinical Trials

The newly proposed DeOndra Dixon INCLUDE Project Act of 2025 is setting up a major, focused research push within the National Institutes of Health (NIH). Essentially, this bill creates a dedicated program—the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome E Project, or simply the INCLUDE Project—to fund research, training, and investigations specifically related to Down syndrome (Sec. 3).

This isn't just a general funding boost; it’s a targeted mandate. The bill recognizes that while life expectancy for people with Down syndrome has soared from about 10 years in 1960 to nearly 60 today, they still face unique health challenges, like a higher risk for Alzheimer's disease, autoimmune disorders, and heart issues (Sec. 2). The goal is to leverage the NIH’s power to improve health outcomes and quality of life for this community.

The Science Gets Specific

What does this mean in practical terms? The NIH will have to funnel resources into several key areas. For the scientists, this means funding for “high-risk, high-reward basic science studies” looking at how that extra copy of chromosome 21 actually affects human development. For families, this translates to more clinical trials focused on new drugs and therapies aimed at helping with daily living activities (Sec. 3). They must also build and maintain a large study group of people with Down syndrome, which is crucial for getting reliable data.

Crucially, the research will focus heavily on the co-occurring conditions. Think about the connection between Down syndrome and Alzheimer's—people with Down syndrome often develop Alzheimer's decades earlier than the general population. This bill directs the NIH to figure out why this happens and how to treat these issues simultaneously (Sec. 3). Any breakthroughs here could potentially benefit the millions of people without Down syndrome who are also dealing with Alzheimer’s or certain autoimmune disorders.

Cutting the Bureaucratic Red Tape

One of the smartest features of this bill is the focus on coordination. The Secretary must ensure that all the various NIH centers and offices—which often operate like separate silos—work together on this research. They are specifically required to avoid duplicating work already being done (Sec. 3). This is a big deal because it means taxpayer dollars are spent efficiently, ensuring that every research dollar moves the ball forward rather than re-treading old ground. Every two years, the Secretary must report back to Congress, detailing exactly which NIH entities were involved and what real-world evidence was generated for patient care.

In short, this is a highly specific, targeted piece of legislation that mandates federal health research funding be used to solve defined medical problems for a specific population. It’s a win for the Down syndrome community, and it could potentially yield medical breakthroughs for the rest of us dealing with conditions like Alzheimer's, making it a solid investment in public health research.