S. 1838 — DeOndra Dixon INCLUDE Project Act of 2025

This section states congressional findings on Down syndrome, including that (1) it is the most common chromosomal disorder, affecting about 6,000 babies born in the United States each year (about 1 in every 700 babies); (2) it results from a full or partial extra copy of chromosome 21, leading to physical, intellectual, and developmental challenges; (3) average U.S. life expectancy for individuals with Down syndrome has increased to nearly 60 years (from about 10 years in 1960); (4) such individuals can attend school, work, make life decisions, have relationships, vote, and contribute to society; (5) they face increased risks for conditions such as autoimmune disorders, leukemia, congenital heart disease, sleep dysfunction, and Alzheimer’s disease (but decreased risks for others); and (6) research and medical care tailored to their disease profile will improve health outcomes and may yield treatments for associated diseases in all individuals.

This section establishes the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project (INCLUDE Project) within the National Institutes of Health (NIH). The program, carried out directly or through grants or contracts by the NIH Director in consultation with other federal agencies and partners, requires (1) high-risk, high-reward basic science studies on chromosome 21 effects; (2) a large study population of individuals with Down syndrome; (3) expanded clinical trials inclusive of or targeted to such individuals; (4) research on biological mechanisms causing anomalies, cognitive dysfunction, and stunted growth; (5) identification of biomarkers for co-occurring conditions; (6) studies on prevalent co-occurring conditions such as Alzheimer’s disease and autoimmunity and their concurrent treatment; and (7) quality-of-life improvements for individuals with Down syndrome and their families. The section further directs NIH coordination to prioritize non-duplicative research, provision of technical assistance to grantees, and biennial reports to specified congressional committees cataloging funded research, participating entities, and resulting real-world evidence for clinical and medical applications.