它需要我们所有人:囊性纤维化基金会如何支持各州推进囊性纤维化新生儿筛查。

IF 4 Q1 GENETICS & HEREDITY
Mary Dwight, Albert Faro
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引用次数: 0

摘要

美国囊性纤维化基金会(CFF)发布的《新生儿囊性纤维化筛查:系统评价驱动的共识指南》提出了实施的挑战。CFF准备与利益攸关方合作,加强新生儿筛查做法。通过向公共卫生创新中心(CPHI)提供的资金,CFF帮助建立了两个基因检测资源中心,以帮助各州在国家统计局的算法中实施CFTR测序。在CFF的资助下,CPHI正在促进质量改进合作,将全国的CF临床医生和NBS工作人员联合起来,分享实验室方法、沟通和教育方面的最佳实践。CFF继续为优化婴儿诊断的筛查改进项目奖提供资金,并开发了一个工具包,帮助CF护理团队与NBS项目合作实施指南。这些举措旨在支持各州和CF提供商调整其算法和流程。通过确定当前的最佳做法,以提高CF NBS的及时性、敏感性和公平性,CFF寻求促进所有CF患者获得更好的结果。认识到对州公共卫生部门的竞争性要求,CFF致力于与利益相关者合作,确保CF NBS有意义的改善。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
It Takes All of Us: How the Cystic Fibrosis Foundation Is Supporting States in Advancing Cystic Fibrosis Newborn Screening.

The publication of Cystic Fibrosis Newborn Screening: A Systematic Review-Driven Consensus Guideline from the United States Cystic Fibrosis Foundation (CFF) presents the challenge of implementation. CFF is prepared to partner with stakeholders to enhance newborn screening (NBS) practices. Through funding provided to the Center for Public Health Innovation (CPHI), the CFF has helped establish two genetic testing resource centers to help states implement CFTR sequencing within the NBS algorithm. CPHI, with CFF funding, is facilitating quality improvement collaboratives that unite CF clinicians and NBS staff nationwide to share best practices in laboratory methods, communication, and education. CFF continues to fund the Screening Improvement Program Award for Optimizing the Diagnosis of Infants and has developed a toolkit to help CF care teams collaborate with NBS programs on guideline implementation. Together, these initiatives aim to support states and CF providers in adapting their algorithms and processes. By identifying current best practices to improve timeliness, sensitivity, and equity in CF NBS, CFF seeks to promote better outcomes for all individuals with CF. Recognizing the competing demands on state public health departments, CFF is committed to partnering with stakeholders to ensure meaningful improvements in CF NBS.

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来源期刊
International Journal of Neonatal Screening
International Journal of Neonatal Screening Medicine-Pediatrics, Perinatology and Child Health
CiteScore
6.70
自引率
20.00%
发文量
56
审稿时长
11 weeks
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