Bill > HR3491

This bill establishes the DeOndra Dixon INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project through the National Institutes of Health (NIH), which will conduct comprehensive research on Down syndrome. The project will focus on seven key areas: investigating the effects of trisomy 21 on human development and health, conducting longitudinal studies across different life stages, expanding clinical trials specifically for individuals with Down syndrome, researching biological mechanisms and developmental anomalies, supporting improved diagnosis and treatment of co-occurring conditions, exploring increased prevalence of conditions like Alzheimer's and autoimmune disorders, and developing research to enhance quality of life for people with Down syndrome. The NIH Director is required to coordinate research efforts across different institutes, avoid duplicative studies, and consult with patient advocates and stakeholders. Additionally, the bill mandates biennial reports to Congress detailing the research conducted, which must include information about the specific institutes involved, the nature of the research, and potential real-world evidence that could improve clinical care for patients with Down syndrome.

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https://www.congress.gov/bill/119th-congress/house-bill/3491/all-info