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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 Committee
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Committee, Work group, Advisory group, or Task Force
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CDC, 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 to establish 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 will support 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 Technical Assistance and Evaluation Program (NewSTEPs) Steering Committee
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Committee, Work group, Advisory group, or Task Force
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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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NEXT Generation Health study
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Research Initiative
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HRSA
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NICHD
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NEXT is a 7-year longitudinal assessment of a representative sample of U.S. adolescent and young adults, starting when they are in the 10th grade. The goals of the NEXT longitudinal study include: to identify the trajectory of adolescent health status and health behaviors from mid-adolescence through the post high school years; to examine individual predictors of the onset of key adolescent risk behaviors and risk indicators during this period; to identify genetic, personal, family, school, and social/environmental factors that provide or sustain positive health behaviors; to identify transition points in health risk and risk behaviors and changes in family, school, and social/environmental precursors to these transitions, and to examine the role of potential gene-environment interactions in the development of health status and health behaviors.
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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, NCCAM
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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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NIAID Universal Influenza Vaccine Working Group
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Other
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CDC
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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 trial
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NIAID-CDC Joint U.S. Partnership Implementing TB Elimination Research (JUPITER)
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Committee, Work group, Advisory group, or Task Force
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CDC
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NIAID
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Through weekly teleconferences, the Joint U.S. Partnership Implementing TB Elimination Research (JUPITER) facilitates cooperation, communication, and collaboration on tuberculosis between the National Institute of Allergy and Infectious Diseases (NIAID) and the Centers for Disease Control and Prevention. This approach helps ensure that Federal activities are coordinated and not duplicated, and stimulates collaborations where appropriate.
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NIAID/CDC Select Agents Laboratory Inspections
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Other
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CDC
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NIAID
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The Centers for Disease Control and Prevention (CDC) Division of Select Agents and Toxins laboratory inspectors visit foreign National Institute of Allergy and Infectious Diseases (NIAID) grantees on behalf of NIAID to ensure that foreign select agents laboratories follow safety, security, and training standards comparable to those for U.S. institutions.
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NICHD Unintentional Injury Prevention Meeting
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Meeting/ Workshop
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CDC, HRSA
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NICHD
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The purpose of this meeting was to bring together experts to present and discuss multi-level predictors of unintentional injuries among children and adolescents, intervention efficacy, and research gaps/needs. The discussion will focus on unique and common characteristics across the injury types as well as research gaps.
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