Bill > HR3491

This bill, known as the DeOndra Dixon INCLUDE Project Act of 2025, amends the Public Health Service Act to establish a comprehensive research program focused on Down syndrome, named the "INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project" or "INCLUDE Project." The program, to be carried out by the Director of the National Institutes of Health (NIH), will encompass high-risk research on how trisomy 21 (the genetic cause of Down syndrome) affects human development and health, promote lifespan research including cohort studies to better understand Down syndrome and related conditions, and expand clinical trials for individuals with Down syndrome, including those for daily living activities. It also mandates research into the biological mechanisms behind structural, functional, and behavioral issues in individuals with Down syndrome, as well as improved diagnosis and treatment of co-occurring conditions like Alzheimer's disease and autoimmune disorders, and research aimed at enhancing the quality of life for individuals with Down syndrome and their families. The Director of NIH will coordinate these efforts across different NIH institutes and centers, prioritize non-duplicative research, and consult with stakeholders like patient advocates. Biennial reports will be submitted to Congress detailing the research conducted, the institutes involved, and any resulting real-world evidence for clinical use.