Bill > S1838

This bill aims to establish a comprehensive research program focused on Down syndrome, to be known as the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project. The bill directs the Secretary of Health and Human Services, through the National Institutes of Health (NIH), to conduct research, training, and investigation into various aspects of Down syndrome. Key research areas include studying the effects of chromosome 21 on human development, maintaining a large population study of individuals with Down syndrome, expanding clinical trials for this population, investigating biological mechanisms underlying the syndrome's characteristics, identifying biomarkers for diagnosis and treatment, exploring why certain co-occurring conditions like Alzheimer's disease are more prevalent in people with Down syndrome, and improving quality of life for individuals with the condition. The bill recognizes that Down syndrome affects about 1 in 700 babies born in the United States, with life expectancy dramatically increasing from 10 years in 1960 to nearly 60 years today. The research program will require biennial reports to Congress detailing the research conducted, the entities involved, and potential real-world clinical applications. Additionally, the bill emphasizes coordinating research efforts across NIH institutes and prioritizing non-duplicative research to maximize scientific understanding and potential medical advancements for individuals with Down syndrome.

Health and Social Services

https://www.congress.gov/bill/119th-congress/senate-bill/1838/all-info