Fink Aliza K, Loeffler Deena R, Marshall Bruce C, Goss Christopher H, Morgan Wayne J
Cystic Fibrosis Foundation, Bethesda, Maryland.
Department of Medicine and Pediatrics, University of Washington, Seattle, Washington.
Pediatr Pulmonol. 2017 Nov;52(S48):S44-S51. doi: 10.1002/ppul.23790. Epub 2017 Sep 14.
In this article, we describe existing CF registries with a focus on US registry data collected through the CF Foundation Patient Registry (CFFPR) and the Epidemiologic Study of CF (ESCF); highlight what registries have taught us regarding epidemiology of CF; showcase the impact of registries on research and clinical care; and discuss future directions. This manuscript complements the plenary address given by Dr Wayne Morgan at the 2016 North American CF Conference by summarizing the key points from the presentation and providing additional detail and information.
在本文中，我们描述了现有的囊性纤维化（CF）注册登记系统，重点关注通过CF基金会患者注册登记系统（CFFPR）和CF流行病学研究（ESCF）收集的美国注册登记数据；强调注册登记系统在CF流行病学方面给我们带来的启示；展示注册登记系统对研究和临床护理的影响；并讨论未来的发展方向。本手稿通过总结演讲要点并提供更多细节和信息，对韦恩·摩根博士在2016年北美CF会议上的全会演讲进行了补充。
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