DeOndra Dixon INCLUDE Project Act of 2025 | ChamberLight
Bills · HR 3491
PASSED HOUSE· 119TH CONGRESS
House BillHR 3491Medical researchResearch administration and funding
DeOndra Dixon INCLUDE Project Act of 2025
INTRO MAY 19· LAST ACTION JUL 21
READING
3MIN
COSPONSORS
18BIPARTISAN
READER REACTIONS0 TOTAL
NO VOTES YET · BE THE FIRST
Introduced only
LEGISLATIVE PROGRESS
STEP 4 / 8
Introduced
In Committee
Reported
Passed House
Passed Senate
Conference
To President
Became Law
WHAT THE BILL DOES
AI-written
This bill matters because it would create a dedicated, coordinated effort to advance scientific understanding and medical care for people with Down syndrome. Currently, research into conditions like Down syndrome can be fragmented across different institutions. By establishing a specific INCLUDE Project, the bill ensures a focused approach to investigate the complexities of Down syndrome, including its various co-occurring health challenges like Alzheimer's disease, heart defects, and autoimmune conditions.
If this bill becomes law, it could lead to the development of new diagnostic tools, more effective treatments, and better support systems, ultimately improving the health outcomes and daily lives of individuals with Down syndrome and their families. Without this law, research might continue at a slower, less coordinated pace, potentially delaying breakthroughs and improvements in care for a vulnerable population.
KEY PROVISIONS
5AI-extracted
PROVISION 01
Establishes the "DeOndra Dixon INCLUDE Project" within NIH specifically for Down syndrome research, training, and investigation.
This creates a dedicated and named program to focus federal resources and efforts on Down syndrome.
PROVISION 02
Directs the program to include research on the effects of trisomy 21 (the genetic cause of Down syndrome) on human development and health across the entire lifespan.
This ensures a comprehensive approach, studying Down syndrome from childhood through adulthood and addressing conditions that emerge at different life stages.
PROVISION 03
Mandates expanding clinical trials to include or specifically target participants with Down syndrome, including trials for new biomedical, pharmacological, and other therapies.
This aims to accelerate the development and testing of treatments and interventions directly relevant to individuals with Down syndrome.
PROVISION 04
Requires coordination among NIH institutes and centers on Down syndrome research and prioritizing non-duplicative efforts.
This ensures efficient use of resources and fosters collaboration to avoid redundant studies.
PROVISION 05
Requires the Director of NIH to consult with patient advocates and other stakeholders when carrying out these activities.
This ensures that the research priorities and activities are informed by the real-world needs and experiences of individuals with Down syndrome and their families.
This bill matters because it would create a dedicated, coordinated effort to advance scientific understanding and medical care for people with Down syndrome. Currently, research into conditions like Down syndrome can be fragmented across different institutions. By establishing a specific INCLUDE Project, the bill ensures a focused approach to investigate the complexities of Down syndrome, including its various co-occurring health challenges like Alzheimer's disease, heart defects, and autoimmune conditions.
If this bill becomes law, it could lead to the development of new diagnostic tools, more effective treatments, and better support systems, ultimately improving the health outcomes and daily lives of individuals with Down syndrome and their families. Without this law, research might continue at a slower, less coordinated pace, potentially delaying breakthroughs and improvements in care for a vulnerable population.
KEY PROVISIONS
AI-extracted
high
Establishes the "DeOndra Dixon INCLUDE Project" within NIH specifically for Down syndrome research, training, and investigation.
This creates a dedicated and named program to focus federal resources and efforts on Down syndrome.
high
Directs the program to include research on the effects of trisomy 21 (the genetic cause of Down syndrome) on human development and health across the entire lifespan.
This ensures a comprehensive approach, studying Down syndrome from childhood through adulthood and addressing conditions that emerge at different life stages.
high
Mandates expanding clinical trials to include or specifically target participants with Down syndrome, including trials for new biomedical, pharmacological, and other therapies.
This aims to accelerate the development and testing of treatments and interventions directly relevant to individuals with Down syndrome.
med
Requires coordination among NIH institutes and centers on Down syndrome research and prioritizing non-duplicative efforts.
This ensures efficient use of resources and fosters collaboration to avoid redundant studies.
med
Requires the Director of NIH to consult with patient advocates and other stakeholders when carrying out these activities.
This ensures that the research priorities and activities are informed by the real-world needs and experiences of individuals with Down syndrome and their families.
Submission of biennial reports to Congress on research conducted or supported under the INCLUDE Project.
GLOSSARY
AI-written
Public Health Service Act
The main U.S. law that gives the federal government the authority to improve public health, including through research, services, and health professional training.
Secretary of Health and Human Services (HHS)
The head of the U.S. Department of Health and Human Services, which oversees many federal health agencies, including the National Institutes of Health (NIH).
National Institutes of Health (NIH)
A major biomedical research agency of the U.S. federal government, made up of several institutes and centers that conduct and support medical research.
Down syndrome
A genetic condition caused by an extra full or partial copy of chromosome 21 (called trisomy 21), leading to developmental and intellectual delays and specific physical features.
Trisomy 21
The scientific term for the genetic condition that causes Down syndrome, referring to the presence of three copies of chromosome 21 instead of the usual two.
Co-occurring conditions
Health issues or diseases that frequently appear together with a primary condition, such as heart defects, Alzheimer's disease, or autoimmune disorders in individuals with Down syndrome.
ACTION TIMELINE
19 EVENTS
JUL 21
Received in the Senate and Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
INTROREFERRAL
JUL 20
Mr. Guthrie moved to suspend the rules and pass the bill.
FLOOR
JUL 20
Considered under suspension of the rules. (consideration: CR H4649-4651)
FLOOR
JUL 20
DEBATE - The House proceeded with forty minutes of debate on H.R. 3491.
A type of research study where a group of people (a cohort) sharing a common characteristic (like having Down syndrome) is followed over a period of time to observe how certain factors affect their health outcomes.
Biomarkers
Measurable indicators of a biological state or condition, such as a specific gene, protein, or metabolic change, that can be used to detect disease, assess risk, or monitor treatment response.
