Sponsors (19)
The bill focuses NIH attention and coordination on Down syndrome research—likely improving diagnosis, treatments, and transparency for affected people—while requiring modest new resources and administrative effort that could divert funding or slow other research priorities.
People with Down syndrome and their families will benefit from increased NIH-funded research into causes, treatments, biomarkers, and quality-of-life interventions, improving diagnosis, care, and long-term outcomes.
Taxpayers, researchers, and people with Down syndrome will benefit from NIH coordination and stakeholder consultation that reduces duplication, aligns research with patient priorities, and improves the efficiency of federal research dollars.
Taxpayers and Congress will gain transparency through biennial NIH reporting on funded Down syndrome research and outcomes that can inform clinical care and oversight.
Scientists and patients with other conditions could see investigator attention or funding shifted toward Down syndrome research if the program is not paired with new resources.
Taxpayers may face modest increases in federal research spending to support the dedicated program, creating opportunity costs for other priorities.
Federal employees and researchers could incur additional administrative and reporting burdens from mandated consultation and biennial reports, which may slow some research activities.
Based on analysis of 2 sections of legislative text.
Authorizes an NIH program to coordinate and expand Down syndrome research, clinical trials inclusion, training, and biennial reporting to Congress.
Introduced May 19, 2025 by Diana DeGette · Last progress May 19, 2025
Creates an NIH program to coordinate and expand research, training, and clinical investigation on Down syndrome across the lifespan. The program will fund and prioritize research on biological mechanisms, biomarkers, co‑occurring conditions (including Alzheimer’s and autoimmune conditions), clinical trials inclusive of people with Down syndrome, lifespan cohort studies, high‑risk/high‑reward trisomy 21 research, and quality‑of‑life studies and training. The NIH Director must coordinate institute activities to avoid duplication, consult stakeholders (including patient advocates), and submit biennial reports to specified House and Senate committees identifying supported projects, which institutes are involved, and any resulting real‑world evidence useful for clinical research and care. The measure authorizes program activity but does not specify new appropriations in the provided text.