DeOndra Dixon INCLUDE Project Act of 2025

This legislation directs the Department of Health and Human Services, through the National Institutes of Health, to run a long-term program focused on Down syndrome. The program would grow research, training, and clinical trials that include people with Down syndrome, with goals like finding better treatments, understanding why certain health problems (such as Alzheimer’s disease and autoimmune conditions) are more common, and improving daily life for people with Down syndrome and their families . It also calls for building large study groups, studying how chromosome 21 affects health, and identifying signs (biomarkers) that can help diagnose risks earlier and tailor care .

The plan must coordinate work across NIH so efforts aren’t duplicated, provide technical help to grantees, and send a public progress report to Congress every two years describing what research was done and how it can be used in real-world care for patients with Down syndrome .

• Who is affected: People with Down syndrome and their families; researchers; medical providers involved in related studies .
• What changes: More coordinated research and clinical trials, larger research participation, and regular reports on results that could guide patient care .
• When: Ongoing program with biennial (every two years) reporting to Congress .