This bill, known as the DeOndra Dixon INCLUDE Project Act of 2025 , amends the Public Health Service Act to establish a dedicated program for Down syndrome research. It authorizes the Director of the National Institutes of Health (NIH) to carry out the "INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project," or INCLUDE Project . The INCLUDE Project will encompass a wide range of research, including high-risk, high-reward studies on the effects of trisomy 21 and promoting research across the lifespan for individuals with Down syndrome. Key elements include expanding clinical trials for novel interventions, investigating biological mechanisms, and improving the diagnosis and treatment of co-occurring conditions such as Alzheimer's disease and autoimmunity. The program also focuses on research to enhance the quality of life for individuals with Down syndrome and their families. Furthermore, the bill mandates that the NIH Director ensure coordination among NIH institutes and centers, prioritizing non-duplicative research efforts. It also requires consultation with stakeholders, including patient advocates, and biennial reports to Congress detailing the research conducted and any resulting real-world evidence.
This bill, known as the DeOndra Dixon INCLUDE Project Act of 2025 , amends the Public Health Service Act to establish a dedicated program for Down syndrome research. It authorizes the Director of the National Institutes of Health (NIH) to carry out the "INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project," or INCLUDE Project . The INCLUDE Project will encompass a wide range of research, including high-risk, high-reward studies on the effects of trisomy 21 and promoting research across the lifespan for individuals with Down syndrome. Key elements include expanding clinical trials for novel interventions, investigating biological mechanisms, and improving the diagnosis and treatment of co-occurring conditions such as Alzheimer's disease and autoimmunity. The program also focuses on research to enhance the quality of life for individuals with Down syndrome and their families. Furthermore, the bill mandates that the NIH Director ensure coordination among NIH institutes and centers, prioritizing non-duplicative research efforts. It also requires consultation with stakeholders, including patient advocates, and biennial reports to Congress detailing the research conducted and any resulting real-world evidence.