Sponsors (19)
The bill centralizes and increases federal support for Down syndrome research—improving care, trials access, and prospects for targeted treatments—while requiring new spending and imposing administrative and funding trade-offs that affect taxpayers and researchers.
People with Down syndrome and their families will gain expanded, coordinated NIH-funded research and greater inclusion in clinical trials, improving access to therapies, evidence-based care, and quality-of-life interventions.
Scientists, clinicians, and health systems will benefit from NIH coordination and biennial reporting that reduces duplicate research and makes it easier to find usable real-world evidence.
Patients with Down syndrome and related comorbidities (e.g., Alzheimer’s, autoimmune disease) could see faster development of biomarkers, improved diagnosis, and more targeted treatments due to encouraged mechanistic studies.
Taxpayers may face higher federal spending to expand NIH programs and trials supporting Down syndrome research, potentially diverting funds from other priorities.
Researchers and research institutions will incur additional administrative and reporting burdens to coordinate activities and produce biennial reports, increasing compliance costs and workload.
Prioritization of Down syndrome research could shift NIH funding away from some investigator-initiated projects, limiting funding opportunities for researchers with other topics.
Based on analysis of 2 sections of legislative text.
Establishes the NIH INCLUDE Project to coordinate and fund Down syndrome research, training, inclusive trials, cohort studies, and related reporting.
Creates the INCLUDE Project at the National Institutes of Health to coordinate and fund research, training, and investigations on Down syndrome across the lifespan. The program will support high-risk/high-reward trisomy 21 science, cohort studies, more inclusive clinical trials, biomarker and mechanism research (including Alzheimer’s and autoimmune conditions), and studies to improve quality of life for people with Down syndrome. Requires NIH to coordinate activities across institutes to limit duplication, consult stakeholders (including patient advocates), and submit a biennial report cataloging participating institutes, types of research, and any real-world evidence useful for clinical research or care.
Official title: DeOndra Dixon INCLUDE Project Act of 2025
Introduced May 19, 2025 by Diana DeGette · Last progress July 21, 2026