DeOndra Dixon INCLUDE Project Act of 2026
What does the DeOndra Dixon INCLUDE Project Act of 2026 do?
S 1838 is a Senate bill sponsored by Sen. John W. Hickenlooper (D-CO). This bill adds a new section 409K to the Public Health Service Act, creating a permanent statutory home for the NIH's INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project (the INCLUDE Project). The NIH Director must carry out the INCLUDE Project as a program of research, training, and investigation on Down syndrome that covers seven listed areas — including trisomy-21 biology, lifespan cohort studies, clinical-trial inclusion, biomarkers, co-occurring conditions such as Alzheimer's and autoimmunity, and quality-of-life improvement. NIH must coordinate related work across its institutes and centers, avoid duplication, consult with patient advocates and stakeholders, and submit a biennial report on the research to Congress.
Did S 1838 pass? Where it stands
As of August 24, 2026, S 1838 has passed the Senate.
Status: Passed Senate
Latest vote: Senate Passed by voice vote on August 6, 2026
Outlook: Likely
Key provisions
- Permanent Statutory Home
- Adds new §409K to Part B of title IV of the Public Health Service Act (42 U.S.C. 284 et seq.)
- Names the program the "INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project" or "INCLUDE Project"
- The NIH Director must carry out the program
- Seven Research Focus Areas
- High-risk, high-reward research on the effects of trisomy 21 on human development and health
- Lifespan cohort studies of participants with Down syndrome
- Expanded clinical trials inclusive of, or expressly for, participants with Down syndrome
- Research on biological mechanisms (structural, functional, behavioral) and stunted growth
- Biomarker research to improve diagnosis and treatment of co-occurring conditions
- Research on co-occurring Alzheimer's/dementia and autoimmunity
- Research on improving quality of life for individuals with Down syndrome and their families
- Coordination and Consultation
- NIH Director must ensure institutes and centers coordinate Down syndrome and co-occurring conditions work
- Coordination flows through the Office of the Director and the section 402(b)(3) priority-setting reviews
- Institutes and centers must prioritize non-duplicative Down syndrome research
- NIH must consult with stakeholders, including patient advocates, to the maximum extent feasible
- Biennial Reports to Congress
- Reports go to House Energy and Commerce and the Labor-HHS-Ed Appropriations Subcommittee
- Reports also go to Senate HELP and the Senate Labor-HHS-Ed Appropriations Subcommittee
- Each report catalogs the research conducted or supported under the section
- Each report identifies participating institutes/centers, notes whether the research is single- or multi-institute, and flags any resulting real-world evidence for clinical research or care
Last updated August 12, 2026