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Creates an NIH-led research program called the INCLUDE Project to expand, coordinate, and prioritize research, clinical trials, training, and interventions focused on Down syndrome and its co-occurring conditions across the lifespan. The NIH Director must promote high-risk/high-reward science, support cohort studies and interventions, improve diagnosis and treatment of related conditions, and report every two years to Congress on work done and any real-world evidence produced. The Director must coordinate across NIH institutes and centers to avoid duplication, consult stakeholders when feasible, and catalog which NIH components supported each study and any clinical or medical evidence resulting from the research.
The bill directs NIH to accelerate and coordinate research on Down syndrome—offering meaningful health, family, and scientific benefits—while creating trade-offs in funding priorities and raising participant privacy and resource-allocation concerns.
People with Down syndrome will gain access to more targeted research that increases prospects for earlier/better diagnostics, therapies, and tailored clinical trials.
Families and caregivers of people with Down syndrome are likely to see improved quality of life from research-backed interventions, therapies, and supports addressing co-occurring conditions and daily living needs.
Researchers, clinicians, and health systems will benefit from better coordination and real-world evidence across NIH, improving study design, data sharing, and translation of findings into care.
Expanding NIH priorities to emphasize Down syndrome research will likely require additional federal funding or reallocation, creating budgetary pressure and potential costs for taxpayers.
Prioritizing this area could crowd out or delay non-duplicative projects in other fields, reducing research opportunities and funding for investigators outside Down syndrome research.
Increased clinical trials and biomarker data collection raise privacy and data‑use concerns for participants unless clear safeguards on consent, data protection, and use are specified and enforced.
Introduced May 19, 2025 by Diana DeGette · Last progress May 19, 2025