Sponsors (19)
The bill increases federal support, study inclusion, and transparency for Down syndrome research—likely improving diagnosis, treatments, and quality of life for affected individuals—while requiring additional federal funds and creating risks that some research approaches or meaningful stakeholder input could be constrained.
People with Down syndrome and their families will gain targeted NIH-funded research into causes, diagnosis, and treatments for co-occurring conditions (e.g., Alzheimer’s disease, autoimmune disorders), increasing the likelihood of better prevention and therapies.
More inclusive clinical trials and cohort studies will improve evidence about the safety and effectiveness of therapies for people with Down syndrome across the lifespan, reducing uncertainty in care and medication use.
Research and training aimed at improving quality of life could produce interventions and supports that help daily functioning and long-term wellbeing for individuals with Down syndrome.
Expanding targeted NIH research on Down syndrome will likely require additional federal funding, creating budgetary pressure and the possibility of diverting funds from other research priorities.
Prioritizing "nonduplicative" projects may restrict researchers whose proposals overlap existing work, potentially limiting some lines of inquiry, collaborative approaches, or replication studies.
The requirement to consult stakeholders only "to the maximum extent feasible" is nonbinding and may not guarantee meaningful input from people with Down syndrome, caregivers, or advocates in practice.
Based on analysis of 2 sections of legislative text.
Authorizes an NIH INCLUDE Project to coordinate and fund research, training, and inclusive clinical studies on Down syndrome and related co‑occurring conditions across the lifespan.
Introduced May 19, 2025 by Diana DeGette · Last progress May 19, 2025
Creates an NIH program called the INCLUDE Project to coordinate and fund research, training, and clinical studies about Down syndrome and related co-occurring conditions across the lifespan. It directs the NIH Director to prioritize nonduplicative research, consult stakeholders (including patient advocates), and send biennial reports to Congress cataloging supported research and any real‑world evidence that can inform care. The law names the program, lists research priorities (high‑risk trisomy 21 studies, lifespan cohorts, inclusive clinical trials, biological mechanisms, biomarkers, Alzheimer’s and autoimmune research, and quality‑of‑life work), and requires coordination across NIH institutes and centers — but it does not appropriate funds or change existing law beyond adding the program authorization.