S. 1838: DeOndra Dixon INCLUDE Project Act of 2026

NIH already runs a Down syndrome research effort called the INCLUDE Project. What it lacks is a statute behind it. S. 1838, the DeOndra Dixon INCLUDE Project Act of 2026, puts one there.

Once the program is written into law, NIH would be required to run it, rather than free to scale it back when priorities shift. The law would also spell out what the program has to cover, which turns a set of agency goals into a checklist Congress can hold NIH to.

That checklist has seven items. It starts with basic science on how an extra copy of chromosome 21 shapes development and health, and runs through lifelong cohort studies, research on growth and brain function, and better diagnosis and treatment of the conditions that tend to come with Down syndrome.

Two items stand out for families. One directs NIH to expand the number of clinical trials that include people with Down syndrome or are built specifically for them — including therapies meant to make everyday activities easier, not only new drugs. The other targets why conditions such as Alzheimer's disease, related dementias, and autoimmune disorders show up more often in people with Down syndrome, and how to treat them alongside each other.

The bill also addresses how the work is organized. NIH's institutes and centers would have to coordinate their Down syndrome research and favor projects that don't repeat what NIH is already doing. The Director would consult patient advocates and other stakeholders where feasible.

Every two years, NIH would send Congress a catalog of the research it ran: which institutes did it, whether it crossed institute lines, and whether it produced real-world evidence doctors can use in care. The bill attaches no dollar figure, so how far the program reaches would still be decided in the yearly appropriations fight.