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Core Policy Mechanism Top 1
INCLUDE Project Down Syndrome Research Program at NIH
Establishes within the Public Health Service Act a named National Institutes of Health (NIH) program — the INCLUDE Project — directing the NIH Director to carry out a coordinated, multi-institute program of research, training, and investigation into Down syndrome and its co-occurring conditions across the lifespan, including clinical trials, biomarker identification, biological mechanism research, and quality-of-life studies.
- Population Scope Low Directly affects individuals with Down syndrome, approximately 200,000–250,000 people in the U.S., well under 1% of the population.
- Budgetary Magnitude Low No specific dollar amount is authorized or appropriated; funding depends entirely on future discretionary appropriations.
- Legal / Regulatory Depth High Creates a new statutory mandate — adding section 409K to the Public Health Service Act — imposing a binding legal duty on the National Institutes of Health (NIH) Director to carry out a named, structured research program, a substantive obligation that did not previously exist in statute.
- Degree of Discretion Granted Medium NIH Director is bound by 'shall' for core program execution, coordination, and biennial reporting, but retains significant latitude over research priorities, institute allocation, and stakeholder consultation scope.
- Implementation & Enforcement Burden Low Imposes no new penalties, compliance infrastructure, or enforcement mechanisms; the only external accountability is a biennial reporting obligation to Congress.
- Temporal Commitment High Persists indefinitely until Congress acts to repeal or amend it.
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Summary
This bill amends the Public Health Service Act to direct the National Institutes of Health (NIH) to carry out a formal research, training, and investigation program focused on Down syndrome, to be known as the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). The program covers areas such as trisomy 21 biology, co-occurring conditions like Alzheimer's disease, clinical trials inclusive of people with Down syndrome, and quality-of-life improvements. NIH is required to coordinate across its institutes, consult stakeholders, and submit biennial reports to Congress.
AI-generated summary, pending human review.
| Version | Event | Date | User support | Your vote | Roll calls |
|---|---|---|---|---|---|
| Original |
Initial publication
May 19, 2025
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May 19, 2025 | No votes yet | — | — |
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Core Policy Mechanism Top 1
INCLUDE Project Down Syndrome Research Program at NIH
Establishes within the Public Health Service Act a named National Institutes of Health (NIH) program — the INCLUDE Project — directing the NIH Director to carry out a coordinated, multi-institute program of research, training, and investigation into Down syndrome and its co-occurring conditions across the lifespan, including clinical trials, biomarker identification, biological mechanism research, and quality-of-life studies.
- Population Scope Low Directly affects individuals with Down syndrome, approximately 200,000–250,000 people in the U.S., well under 1% of the population.
- Budgetary Magnitude Low No specific dollar amount is authorized or appropriated; funding depends entirely on future discretionary appropriations.
- Legal / Regulatory Depth High Creates a new statutory mandate — adding section 409K to the Public Health Service Act — imposing a binding legal duty on the National Institutes of Health (NIH) Director to carry out a named, structured research program, a substantive obligation that did not previously exist in statute.
- Degree of Discretion Granted Medium NIH Director is bound by 'shall' for core program execution, coordination, and biennial reporting, but retains significant latitude over research priorities, institute allocation, and stakeholder consultation scope.
- Implementation & Enforcement Burden Low Imposes no new penalties, compliance infrastructure, or enforcement mechanisms; the only external accountability is a biennial reporting obligation to Congress.
- Temporal Commitment High Persists indefinitely until Congress acts to repeal or amend it.
No signal yet
Core Policy Mechanism
INCLUDE Project Down Syndrome Research Program at NIH
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