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." This 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 research across the lifespan for individuals with Down syndrome including studies on co-occurring conditions and new interventions, and expand clinical trials for participants with Down syndrome. It also aims to research the biological mechanisms behind anomalies and dysfunction in individuals with Down syndrome, improve diagnosis and treatment of co-occurring conditions like Alzheimer's and autoimmune diseases, and investigate ways to enhance 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. The bill also mandates biennial reports to Congress detailing the research conducted and any resulting real-world evidence for clinical care.