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本文引用的文献

1
Health law - genetics - Congress restricts use of genetic information by insurers and employers. - Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, 122 Stat. 881 (to be codified in scattered sections of 26, 29, and 42 U.S.C.).健康法 - 遗传学 - 国会限制保险公司和雇主使用遗传信息。 - 《2008年遗传信息非歧视法》,公法第110 - 233号,《美国法典》第122编第881条(将编入《美国法典》第26编、第29编和第42编的零散部分)
Harv Law Rev. 2009 Jan;122(3):1038-45.
2
Effectiveness of a clinical pathway for the emergency treatment of patients with inborn errors of metabolism.一种用于代谢性先天性疾病患者急诊治疗的临床路径的有效性。
Pediatrics. 2008 Dec;122(6):1191-5. doi: 10.1542/peds.2008-0205.
3
Newborn screening of metabolic disorders: recent progress and future developments.新生儿代谢紊乱筛查:最新进展与未来发展
Nestle Nutr Workshop Ser Pediatr Program. 2008;62:81-93; discussion 93-6. doi: 10.1159/000146253.
4
Advancing personalized health care through health information technology: an update from the American Health Information Community's Personalized Health Care Workgroup.通过健康信息技术推进个性化医疗保健:美国健康信息社区个性化医疗保健工作组的最新情况
J Am Med Inform Assoc. 2008 Jul-Aug;15(4):391-6. doi: 10.1197/jamia.M2718. Epub 2008 Apr 24.
5
Impact of Hurricane Katrina on newborn screening in Louisiana.
Pediatrics. 2007 Oct;120(4):e749-55. doi: 10.1542/peds.2006-3616.
6
Making the case for objective performance metrics in newborn screening by tandem mass spectrometry.论证串联质谱法在新生儿筛查中客观性能指标的必要性。
Ment Retard Dev Disabil Res Rev. 2006;12(4):255-61. doi: 10.1002/mrdd.20130.
7
Newborn screening: toward a uniform screening panel and system.新生儿筛查:迈向统一的筛查项目和系统。
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8
Naming and counting disorders (conditions) included in newborn screening panels.新生儿筛查项目中包含的命名和计数障碍(病症)。
Pediatrics. 2006 May;117(5 Pt 2):S308-14. doi: 10.1542/peds.2005-2633J.
9
Comprehensive cost-utility analysis of newborn screening strategies.新生儿筛查策略的综合成本效用分析
Pediatrics. 2006 May;117(5 Pt 2):S287-95. doi: 10.1542/peds.2005-2633H.
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Financing state newborn screening programs: sources and uses of funds.为国家新生儿筛查项目提供资金:资金来源与用途
Pediatrics. 2006 May;117(5 Pt 2):S270-9. doi: 10.1542/peds.2005-2633F.

利用健康信息交换改进新生儿筛查实验室检测申请和结果报告。

Improving newborn screening laboratory test ordering and result reporting using health information exchange.

机构信息

Children's Health Services Research Program, Indiana University School of Medicine, Indianapolis, Indiana 46202-5140, USA.

出版信息

J Am Med Inform Assoc. 2010 Jan-Feb;17(1):13-8. doi: 10.1197/jamia.M3295.

DOI:10.1197/jamia.M3295
PMID:20064796
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2995628/
Abstract

Capture, coding and communication of newborn screening (NBS) information represent a challenge for public health laboratories, health departments, hospitals, and ambulatory care practices. An increasing number of conditions targeted for screening and the complexity of interpretation contribute to a growing need for integrated information-management strategies. This makes NBS an important test of tools and architecture for electronic health information exchange (HIE) in this convergence of individual patient care and population health activities. For this reason, the American Health Information Community undertook three tasks described in this paper. First, a newborn screening use case was established to facilitate standards harmonization for common terminology and interoperability specifications guiding HIE. Second, newborn screening coding and terminology were developed for integration into electronic HIE activities. Finally, clarification of privacy, security, and clinical laboratory regulatory requirements governing information exchange was provided, serving as a framework to establish pathways for improving screening program timeliness, effectiveness, and efficiency of quality patient care services.

摘要

新生儿筛查(NBS)信息的采集、编码和传播对公共卫生实验室、卫生部门、医院和门诊护理实践构成了挑战。越来越多的筛选条件和解释的复杂性导致对综合信息管理策略的需求不断增长。这使得 NBS 成为电子健康信息交换(HIE)工具和架构的重要测试,因为它涉及到个体患者护理和人群健康活动的融合。出于这个原因,美国健康信息共同体承担了本文所述的三项任务。首先,建立了新生儿筛查用例,以促进通用术语和指导 HIE 的互操作性规范的标准化协调。其次,开发了新生儿筛查编码和术语,以整合到电子 HIE 活动中。最后,阐明了隐私、安全和临床实验室监管要求,这些要求是信息交换的监管要求,为改善筛查计划的及时性、有效性和提高质量患者护理服务的效率提供了框架。