The National Institutes of Health (NIH) would run a dedicated research program on Down syndrome, called the INCLUDE Project, studying how the condition affects development and health across a person's lifetime. The program would fund research into conditions that often occur alongside Down syndrome, such as Alzheimer's disease, and work to expand clinical trials that include people with Down syndrome. NIH would be required to consult with patient advocates and families to make sure the research reflects their needs, and to avoid duplicating work already underway. Every two years, NIH would have to report to Congress on what research it funded and what it found. The bill affects people with Down syndrome, their families, and researchers working on related therapies.
Transparency & Accountability
- Reporting requirements — NIH must submit biennial reports to Congress on Down syndrome research
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
Details
- Congress
- 119th
- Chamber
- House
- Status
- summarized
- Action
- Reported to House
- Action Date
- 2026-07-02
- Date Added
- 2026-07-16
- Source
- Congress.gov →
Like reading a bill in plain English?
We're building an app that does this for every bill in Congress and lets you tell your reps how you want them to vote. We're a small team getting ready to launch, and we're trying to show investors that real people want this. Be one of them. Help us get it built. Leave your email and we'll tell you the moment the app is ready.