S. 1838: DeOndra Dixon INCLUDE Project Act of 2026

S. 1838 would make Down syndrome research a permanent, named NIH program instead of an effort that depends on shifting agency priorities.

The bill tells NIH to keep building the INCLUDE Project around the full arc of life: basic research on trisomy 21, long-term cohort studies, and more clinical trials that include people with Down syndrome or are designed specifically for them. It also covers therapies meant to help with daily living, not just drug development.

Just as important, the bill broadens the picture beyond Down syndrome alone. NIH would be directed to study co-occurring conditions including Alzheimer’s disease, related dementias, and autoimmunity, along with biomarkers that could help with diagnosis, risk, and treatment.

If your family has struggled to find research that reflects real-life care needs, this bill pushes NIH toward studies that are more coordinated, more inclusive, and more useful in the clinic.

The bill also tries to reduce duplication inside NIH. The agency would have to coordinate this work across its institutes and centers, consult with stakeholders including patient advocates, and send Congress a report every 2 years identifying what research was done and what real-world evidence came out of it.

What it does not do is provide a new dollar amount, so the program's reach would still depend on future funding decisions inside Congress and NIH.