新生儿筛查新步骤：国家新生儿筛查技术援助资源中心的设立

NewSTEPs: The Establishment of a National Newborn Screening Technical Assistance Resource Center.

作者信息

Ojodu Jelili, Singh Sikha, Kellar-Guenther Yvonne, Yusuf Careema, Jones Elizabeth, Wood Thalia, Baker Mei, Sontag Marci K

机构信息

Association of Public Health Laboratories, 8515 Georgia Avenue, Suite 700, Silver Spring, MD 20910, USA.

Colorado School of Public Health, University of Colorado Denver, Anschutz Medical Campus, Aurora, CO 80045, USA.

出版信息

Int J Neonatal Screen. 2017 Dec 22;4(1):1. doi: 10.3390/ijns4010001. eCollection 2018 Mar.

DOI:10.3390/ijns4010001

PMID:33072927

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7510199/

Abstract

As newborn screening (NBS) programs in the US implement expanded screening panels, utilize emerging technologies and identify areas for improvement, the need to establish and maintain a community engagement based national technical assistance center becomes apparent. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs)-a program of the Association of Public Health Laboratories (APHL) in partnership with the Colorado School of Public Health (ColoradoSPH), offers expertise in newborn screening program development, member connection, data analysis, and program evaluation. NewSTEPs provides a secure online data repository designed to collect comprehensive data on newborn screening programs in three strata: state profiles (description of each state program including program hours, fees, and disorders screened), quality indicators (metrics of program performance encompassing screening accuracy and timeliness) and NBS public health surveillance case definitions. NewSTEPs was created in 2012 under a cooperative agreement with the United States Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Successful activities of NewSTEPs have resulted in the establishment of a technical assistance resource center and the organization of a network of newborn screening experts. In addition, NewSTEPs coordinates efforts with other federally funded programs in order to maximize resources and to ensure a unified approach to data collection and information sharing.

摘要

随着美国新生儿筛查（NBS）项目实施扩大后的筛查面板、采用新兴技术并确定改进领域，建立并维持一个基于社区参与的国家技术援助中心的需求变得显而易见。新生儿筛查技术援助与评估项目（NewSTEPs）——公共卫生实验室协会（APHL）与科罗拉多公共卫生学院（ColoradoSPH）合作开展的一个项目，在新生儿筛查项目开发、成员联系、数据分析和项目评估方面提供专业知识。NewSTEPs提供一个安全的在线数据存储库，旨在收集新生儿筛查项目三个层面的全面数据：州概况（每个州项目的描述，包括项目时长、费用和筛查的疾病）、质量指标（涵盖筛查准确性和及时性的项目绩效指标）以及新生儿筛查公共卫生监测病例定义。NewSTEPs于2012年根据与美国卫生与公众服务部（HHS）、卫生资源与服务管理局（HRSA）、母婴健康局（MCHB）的合作协议设立。NewSTEPs的成功活动促成了一个技术援助资源中心的建立以及一个新生儿筛查专家网络的组织。此外，NewSTEPs与其他联邦资助项目协调工作，以最大限度地利用资源，并确保在数据收集和信息共享方面采取统一方法。