Sponsors (19)
The bill directs targeted NIH investment and coordination to improve research, trials, and clinical knowledge for people with Down syndrome — increasing prospects for better care — while imposing modest federal costs and administrative requirements that could divert attention or resources from other research areas if not accompanied by new funding.
People with Down syndrome and their families will see increased NIH-funded research specifically focused on causes, treatments, and quality-of-life interventions, raising the likelihood of new, tailored therapies and supports.
Patients with Down syndrome (and clinicians who treat them) will have greater access to clinical trials either inclusive of or specific to Down syndrome, improving access to novel therapies and more evidence-based care.
People with Down syndrome (and older Americans with related risks) will benefit from improved identification of biomarkers and real‑world evidence that can enable earlier diagnosis and better management of co‑occurring conditions such as Alzheimer's and autoimmune disorders.
Scientists and patients with other conditions could see attention or funding shifted away from their areas if Down syndrome research is prioritized without dedicated new resources, potentially slowing progress elsewhere.
Taxpayers could face modestly higher federal research costs and opportunity costs from increased NIH spending on a new Down syndrome program.
Federal employees and researchers may face additional administrative and reporting burdens from mandated consultation and biennial reporting, which could slow implementation of some research activities.
Based on analysis of 2 sections of legislative text.
Creates an NIH INCLUDE research program to study Down syndrome across the lifespan, expand clinical trials, train researchers, and report biennially on supported research.
Introduced May 19, 2025 by Diana DeGette · Last progress May 19, 2025
Creates a new NIH research program called the INCLUDE Project to support and coordinate research, training, and clinical investigation focused on Down syndrome across the lifespan. The program directs NIH to fund and prioritize a set of research areas (including clinical trials, biological mechanisms, biomarkers, co‑occurring conditions such as Alzheimer’s and autoimmunity, and quality‑of‑life work), to coordinate efforts across NIH institutes, consult stakeholders, and submit biennial reports on supported research and any resulting real‑world evidence. The law authorizes the program’s activities and sets reporting and coordination requirements for the NIH Director but does not specify dollar amounts or an appropriation schedule.