Sponsors (9)
The bill directs federal research coordination and increased study of Down syndrome to improve diagnosis, care, and social inclusion, but does so at added federal cost and with risks of resource diversion, privacy concerns, and limited immediate services unless further funding and protections are provided.
People with Down syndrome will receive increased research and clinical trials focused on their conditions, improving diagnosis and treatment options.
People with Down syndrome are explicitly recognized as able to attend school, work, vote, and participate in society, supporting inclusive policies and protections.
Families of individuals with Down syndrome will benefit from research aimed at quality-of-life improvements and expanded support services informed by new findings.
Taxpayers may face increased federal spending to establish and maintain the program, including grants and coordination activities.
A focused research effort on Down syndrome could divert NIH resources from other conditions if overall budgets are not increased, potentially slowing progress elsewhere.
The bill's findings by themselves do not create funding or services, so affected families may see no immediate practical benefits without additional appropriations or implementing actions.
Based on analysis of 3 sections of legislative text.
Creates the NIH INCLUDE Project to coordinate and expand research, trials, biomarker development, and reporting focused on Down syndrome and related conditions.
Official title: Amend the Public Health Service Act to authorize the Secretary of Health and Human Services to carry out a program of research, training, and investigation related to Down syndrome, and for other purposes.
Introduced May 21, 2025 by John Wright Hickenlooper · Last progress May 21, 2025
Creates the DeOndra Dixon INCLUDE Project at the National Institutes of Health to coordinate, expand, and support research, clinical trials, training, and data collection focused on Down syndrome and related health conditions. The program directs NIH to fund or carry out basic and clinical research, build large study populations and biomarkers, study common co-occurring conditions (for example Alzheimer’s disease and autoimmune disorders), provide technical assistance, avoid duplicative efforts across agencies, and deliver biennial reports to Congress on supported research and any real-world evidence produced.