HR-3491 — DeOndra Dixon INCLUDE Project Act of 2025

YourVoice.Now Summary

Your MoneyTransparency & Accountability

More clinical trials would open to people with Down syndrome — NIH would have to run the research.

Your Money

Clinical trials open to people with Down syndrome

NIH would have to raise the number of studies that enroll people with Down syndrome. That includes tests of new drugs and therapies. Joining a trial would stay voluntary.

Transparency & Accountability

Families' say in research plans — NIH must consult patient advocates

NIH would have to ask patient advocates and others what people with Down syndrome need. The bill says to do this as far as it is workable.

Regular reporting on Down syndrome research — to Congress every two years

Every two years, NIH would have to send Congress a catalog of the research it ran or paid for. The report must name which institutes did the work and any findings that could help patient care.

More about this bill

If someone in your family has Down syndrome, more clinical trials would be open to them. Federal law would require the National Institutes of Health (NIH) to run a Down syndrome research program, the INCLUDE Project. It would study how the condition affects people at every age. It would also seek better ways to find and treat related problems, such as Alzheimer's disease. NIH would have to ask patient advocates what families need. Every two years, it would report to Congress on the research. The bill sets aside no new money. Most other people would see no change in daily life.

Congressional Summary

DeOndra Dixon INCLUDE Project Act of 2025This bill provides statutory authority for a program of the National Institutes of Health (NIH) that carries out research and training relating to Down syndrome, including with respect to co-occurring conditions and improving the quality of life of affected individuals. The NIH must implement the program in consultation with relevant stakeholders and avoid duplicating existing NIH Down syndrome research.Biennially, the NIH must submit to Congress a report cataloging the research, including results that may be used in medical care or clinical research.

Legislative Subjects

Congressional oversightGeneticsHereditary and development disordersMedical researchResearch administration and funding

Details

Congress: 119th
Chamber: House
Status: summarized
Action: Reported to House
Action Date: 2026-07-02
Date Added: 2026-07-16
Source: Congress.gov →

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