DeOndra Dixon INCLUDE Project Act of 2025
Summary
What This Bill Does
The DeOndra Dixon INCLUDE Project Act adds a new Public Health Service Act section for Down syndrome research. It requires the Director of the National Institutes of Health to carry out a program of research, training, and investigation related to Down syndrome known as the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project, or INCLUDE Project. The program must support high-risk, high-reward research on trisomy 21 and human development, lifespan cohort studies, clinical trials that include or focus on participants with Down syndrome, biological-mechanism research, diagnosis and treatment of co-occurring conditions, and resources that help researchers better understand Down syndrome across life stages.
Who Benefits and How
People with Down syndrome benefit because NIH must support research on development, health, co-occurring conditions, therapies, and activities of daily living. Families of people with Down syndrome benefit from research aimed at better diagnosis, treatment, and interventions across the lifespan. Down syndrome researchers benefit from a named NIH program, training support, cohort studies, and clinical trial expansion. Clinical trial participants with Down syndrome benefit because trials must be inclusive of, or expressly designed for, people with Down syndrome. NIH institutes and centers benefit from clearer statutory direction to coordinate this research agenda.
Who Bears the Burden and How
The NIH Director must operate the INCLUDE Project and coordinate research, training, investigations, and clinical-trial expansion. NIH program officers must manage grants, cohorts, trials, data resources, and cross-institute coordination. Research institutions receiving grants must meet study, trial, data, and participant-protection requirements. Federal appropriators and taxpayers bear the funding burden for any expanded research commitments.
Key Provisions
- Establishes the INCLUDE Project as a statutory NIH Down syndrome research program.
- Requires high-risk, high-reward research on trisomy 21 effects on human development and health.
- Directs lifespan cohort studies to improve understanding of Down syndrome and co-occurring conditions.
- Expands clinical trials inclusive of, or expressly for, participants with Down syndrome.
- Supports research on biological mechanisms, diagnosis, treatment, interventions, and activities of daily living.
Evidence Chain:
This summary is generated from the full bill text using AI analysis. Expand "Detailed Analysis" below for identified beneficiaries/burden bearers with clause-level evidence links.
At a Glance
What This Bill Does
Creates the DeOndra Dixon INCLUDE Project in statute by requiring the NIH Director to carry out Down syndrome research, training, and investigation covering trisomy 21 biology, lifespan cohorts, clinical trials, co-occurring conditions, data resources, and coordination across NIH institutes.
Key Policy Areas
Health Research, Disability, Medical Innovation
Primary Purpose
Creates the DeOndra Dixon INCLUDE Project in statute by requiring the NIH Director to carry out Down syndrome research, training, and investigation covering trisomy 21 biology, lifespan cohorts, clinical trials, co-occurring conditions, data resources, and coordination across NIH institutes.
Policy Domains
House resolution provisions
Identified Gains
- People with Down syndrome
- Families of people with Down syndrome
- Down syndrome researchers
- Clinical trial participants
- NIH institutes
Identified Costs
- NIH Director
- NIH program officers
- Research institution administrators
- Federal taxpayers
Sponsors
Legislative Progress
ReportedOrdered to be Reported by the Yeas and Nays: 46 …
Committee Consideration and Mark-up Session Held
Ms. DeGette (for herself, Mr. Hudson, Ms. DeLauro, Mr. Cole, …
Referred to the House Committee on Energy and Commerce.
Introduced in House
Stakeholder Effects
cui bono?How this legislation distributes effects. Mention counts reflect frequency, not effect magnitude.
Clinical trial participants, People with Down syndrome
Bill Structure & Actor Mappings
Who is "The Secretary" in each section?
- "nih"
- → National Institutes of Health
- "director"
- → Director of NIH
We use a combination of our own taxonomy and classification in addition to large language models to assess meaning and potential beneficiaries. High confidence means strong textual evidence. Always verify with the original bill text.
Learn more about our methodology