DeOndra Dixon INCLUDE Project Act of 2026

S. 1838, the DeOndra Dixon INCLUDE Project Act of 2026, would amend the Public Health Service Act to formally authorize the National Institutes of Health to run a dedicated research program on Down syndrome, called the INCLUDE Project. The program would fund high-risk, high-reward research into trisomy 21, support long-term studies of people with Down syndrome across their lifespan, expand clinical trials that include or are designed for this population, and investigate conditions that frequently co-occur with Down syndrome, such as Alzheimer's disease and autoimmune disorders. The bill also directs NIH to coordinate related work across its institutes and centers, avoid duplicating existing research, and consult with patient advocates and other stakeholders.

The bill primarily affects NIH's research operations and, indirectly, individuals with Down syndrome and their families, who are the intended beneficiaries of the expanded research and clinical trial access. It would also create a new reporting obligation: NIH's Director would have to submit a report every two years to relevant House and Senate committees detailing the research conducted under the program and any resulting real-world evidence.

The Senate passed the bill by voice vote on August 6, 2026, with an amendment. It now goes to the House of Representatives, which must pass it (in the same or a further-amended form) before it could be sent to the President.

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