Bill > S1838

This bill, titled the DeOndra Dixon INCLUDE Project Act of 2026, amends the Public Health Service Act to establish a new program within the National Institutes of Health (NIH) called the "INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project," or the INCLUDE Project. This program will focus on research, training, and investigation related to Down syndrome, aiming to understand its effects on human development and health, particularly concerning trisomy 21 (the genetic cause of Down syndrome). Key elements include high-risk research, promoting lifespan studies to understand Down syndrome and related conditions, expanding clinical trials for individuals with Down syndrome, researching biological mechanisms behind anomalies and dysfunction, improving diagnosis and treatment of co-occurring conditions like Alzheimer's and autoimmune diseases, and enhancing the quality of life for individuals with Down syndrome and their families. The Director of NIH will coordinate these efforts, prioritize non-duplicative research, and consult with stakeholders like patient advocates. Biennial reports will be submitted to Congress detailing the research conducted, its findings, and potential applications for clinical care.