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Newborn Screening Coding and Terminology Guide
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Resource Development
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CDC, HRSA, OS
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NLM, NHGRI, NHLBI, NICHD
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This ongoing collaboration develops, supplements and publicizes a free online resource with guidance to help promote efficient electronic exchange of standardized newborn screening data. Related efforts include studying the screening process for diseases including severe combined immunodeficiency (SCID), lysosomal storage disorders (LSDs), and critical congenital heart disease (CCHD), and developing standard codes for ordering and reporting the results of newborn screening for SCID, CCHD, and other conditions added to the Uniform Recommended Screening Panel by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
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Newborn Screening Federal Partners Committee
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Committee, Work group, Advisory group, or Task Force
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AHRQ, CDC, FDA, HRSA
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NICHD, NHLBI, NLM
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The National Institutes of Health, Health Resources and Services Administration, Centers for Disease Control and Prevention (CDC), the American College of Medical Genetics and the Genetic Alliance meet monthly, in person or online, to discuss and coordinate current activities and initiatives in newborn screening. Topics include the activities of the Newborn Screening Translational Research Network Coordinating Center, the Clearinghouse of Newborn Screening Information, Sickle Cell Screening Programs, the CDC Newborn Screening Quality Assurance Program, and the Regional Newborn Screening Collaboratives.
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Newborn Screening Pompe Pilot Study
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Research Initiative
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CDC, FDA, HRSA
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NICHD
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The purpose of this research initiative is establishing a resource to be used to support the development and rapid data collection of Pompe Disease to be added to the Recommended Uniform Screening Panel (RUSP) and to pilot the development and rapid data collection of a Pompe Disease newborn screening assay. This project supports the development of a Pompe Disease screening method in the newborn screening environment by establishing a pool of high throughput newborn screening laboratories (state and private) with the capacity to screen a large number of newborns in relatively short periods of time (12-18 months). These groups address follow-up and educational needs stemming from pilot studies for the newborn screening system.
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Newborn Screening Quality Improvement Committee
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Committee, Work group, Advisory group, or Task Force
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CDC, FDA, HRSA
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NICHD
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This committee seeks to improve the quality of newborn screening.
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Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs) Steering Committee
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Committee, Work group, Advisory group, or Task Force
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CDC, FDA, HRSA
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NICHD
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Steering committee for the Newborn Screening Technical Assistance and Evaluation Program (NEWSteps). NEWSteps is a cooperative agreement related to newborn screening that the Health Resources and Services Administration funds.
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NEWSteps Steering Committee
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Committee, Work group, Advisory group, or Task Force
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CDC, FDA, HRSA
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NICHD
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This steering committee supports the mission of NEWSteps which is to achieve the highest quality for newborn screening systems by providing relevant, accurate tools and resources and to facilitate collaboration between state programs and other newborn screening partners.
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NEXT Longitudinal Study 2009-2013: Health Behavior in School-Age Children
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Health Survey
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HRSA
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NIAAA, NCI, NHLBI, NICHD
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NEXT is a four-year longitudinal assessment of a representative sample of U.S. school children starting at grade 10. The goals of the U.S. NEXT longitudinal study include: to identify the trajectory of adolescent health status and health behaviors from mid-adolescence through the post high school year; to examine individual predictors of the onset of key adolescent risk behaviors and risk indicators during this period; to identify family, school, and social/environmental factors that promote or sustain positive health behaviors; and to identify transition points in health risk and risk behaviors and changes in family, school, and social/environmental precursors to these transitions.
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NHLBI Federal COPD Workshop
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Committee, Work group, Advisory group, or Task Force
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ACL, CDC, CMS, FDA, HRSA, IHS
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NHLBI, NCCIH
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The Senate Appropriations Committee in FY2012 encouraged the National Heart, Lung and Blood Institute (NHLBI) "to work with community stake-holders and other Federal Agencies, including CDC, to develop a national action plan to respond to the growing burden of this disease." In response to this congressional encouragement, NHLBI hosted in Bethesda, Maryland, on May 3, 2013, a forum of representatives from Federal Agencies and Institutes to share information about current activities related to Chronic Obstructive Pulmonary Disease (COPD) and discuss opportunities for further cooperation and enhanced effectiveness of the Federal response to this serious public health problem.
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NHLBI Workshop on Implementation Science in Critical Care
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Meeting/ Workshop
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AHRQ
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NHLBI, CSR, NICHD, NIGMS
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NHLBI convened a workshop (April 6-7, 2016) to discuss opportunities and needs for implementation science research in critical care. Data show that evidence-based practices in critical care known to improve patient outcomes often are not implemented in clinical practice. Implementation science is a growing field that can enhance the translation of evidence into practice. The goal of this workshop was to examine gaps and opportunities for implementation science research in critical care.
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NIAID Universal Influenza Vaccine Working Group
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Committee, Work group, Advisory group, or Task Force
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CDC, OS
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NIAID
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HHS working group established to facilitate the development of universal influenza vaccines and move them toward clinical trials.
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