Newborn Screening Saves Lives Reauthorization Act of 2025
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Progress
Where this bill stands in the legislative process.
- Introduced
- Passed House
- Passed Senate
- To President
- Became Law
Overview
This bill reauthorizes the Newborn Screening Saves Lives Reauthorization Act, aiming to improve and expand newborn screening programs across the United States. It focuses on enhancing educational resources for parents and families, strengthening the Advisory Committee on Heritable Disorders in Newborns and Children, and supporting research into new screening technologies. The bill also seeks to improve data collection and sharing among states and federal agencies to better track and manage the newborn screening system.
Key provisions
- Reauthorizes the Hunter Kelly Research Program at the National Institutes of Health.
- Mandates the development and delivery of educational programs for parents and families regarding newborn screening.
- Updates the Advisory Committee on Heritable Disorders in Newborns and Children to include consumer-friendly materials and process improvements.
- Requires the development of standardized data collection and reporting for newborn screening programs.
- Authorizes increased funding for newborn screening programs through 2030.
- Clarifies that research using newborn blood spots for federally funded research is considered secondary research.
- Expands the Clearinghouse of Newborn Screening Information to complement existing sharing efforts.
- Promotes data sharing linkages between state newborn screening and birth defects surveillance programs.
Who is affected
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