National evaluation of US newborn screening system components

被引:50
作者
Therrell, Bradford L.
Hannon, W. Harry
机构
[1] Natl Newborn Screening & Genet Resource Ctr, Austin, TX 78757 USA
[2] Univ Texas, Hlth Sci Ctr, Dept Pediat, San Antonio, TX 78284 USA
[3] Ctr Dis Control & Prevent, Div Sci Lab, Newborn Screening Branch, Atlanta, GA USA
来源
MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES RESEARCH REVIEWS | 2006年 / 12卷 / 04期
关键词
newborn screening; system evaluation; screening laboratory; quality improvement; program assessment;
D O I
10.1002/mrdd.20124
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Newborn screening has existed as a state-based public health service since the early 1960s. Every state and most territorial jurisdictions have comprehensive newborn screening programs in place, but in the United States a national newborn screening policy does not exist. This results in different administrative infrastructures, screening requirements, laboratory and follow-up services, medical management approaches, and related activities across the country. Federal initiatives and support have contributed to limited evaluations of various aspects of individual newborn screening programs at the national level, but funding is an issue. The national evaluation strategies have taken various forms, all with the intent of improving the screening system through review of actions taken and suggestions for future improvements. While participation in the national evaluation effort for newborn screening laboratory practices includes all US programs, and this has aided in improving quality and harmonizing protocols, other national evaluation activities have been only moderately successful. National data reporting of quality indicators for various program elements must be comprehensive and timely, and the elements must be universally accepted in order to meet the evaluation and improvement needs of the national newborn screening system. A comprehensive real time national evaluation activity will likely require additional resources and enforcement incentives. Limited federal actions through grant incentives and selected reporting requirements provide a possible means of stimulating programs to participate in national harmonization efforts. Published 2006 Wiley-Liss, Inc.
引用
收藏
页码:236 / 245
页数:10
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