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Parents Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project

机译：父母在一项试点研究项目中筛选新生儿进行FMR1基因扩增的决定

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摘要

OBJECTIVE:The goal of this study was to document rates of parental consent in a pilot study of newborn screening for FMR1 gene expansions, examine demographic characteristics of mothers who consented or declined, describe the reasons for their decision, and discuss ethical and social aspects of the consent process.

机译：目的：本研究的目的是在一项针对FMR1基因扩展的新生儿筛查的初步研究中，记录父母的同意率，检查同意或拒绝的母亲的人口统计学特征，描述其决定的原因，并讨论其伦理和社会方面。同意过程。

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期刊名称 Pediatrics
作者
Debra Skinner; Summer Choudhury; John Sideris; Sonia Guarda; Allen Buansi; Myra Roche; Cynthia Powell; Donald B. Bailey Jr;
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作者单位

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年(卷),期 -1(127),6
年度 -1
页码 e1455–e1463
总页数 9
原文格式 PDF
正文语种
中图分类儿科学;
关键词
newborn screening informed consent patient decision making screening tools;

机译：新生儿筛查;知情同意书;患者决策;筛查工具;

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专利

1. Design and evaluation of a decision aid for inviting parents to participate in a fragile X newborn screening pilot study (Conference Paper) [J] . Bailey Jr. D.B., Lewis M.A., Harris S.L., Journal of genetic counseling . 2013,第1期

机译：邀请父母参加脆弱的X新生儿筛查试验研究的决策辅助工具的设计和评估（会议论文）
2. Design and Evaluation of a Decision Aid for Inviting Parents to Participate in a Fragile X Newborn Screening Pilot Study [J] . Donald B. Bailey Jr., Megan A. Lewis, Shelly L. Harris, Journal of Genetic Counseling . 2013,第1期

机译：邀请家长参加脆弱X新生儿筛查试验研究的决策辅助的设计和评估
3. Evaluating parents’ decisions about next-generation sequencing for their child in the NC NEXUS (North Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized controlled trial protocol [J] . Laura V. Milko, Christine Rini, Megan A. Lewis, Trials . 2018,第1期

机译：在NC Nexus（北卡罗来纳州新生儿exame exorments excormence测序）中，评估父母对其孩子的下一代测序的决定（用于通用筛查）研究：随机对照试验方案
4. Assigning projects to project managers in a multiple-project management environment: a pilot study of a decision support model [C] . Patanakul, P., Milosevic, . 2003

机译：在多项目管理环境中将项目分配给项目经理：决策支持模型的试点研究
5. The role of the genetic counselor in newborn screening follow-up services: Recommendations regarding genetic counselor roles and education in anticipation of increased population-based screening. [D] . Giordano, Jessica L. 2008

机译：遗传咨询师在新生儿筛查随访服务中的作用：关于遗传咨询师在预期以人群为基础的筛查方面的作用和教育的建议。
6. Evaluating parents’ decisions about next-generation sequencing for their child in the NC NEXUS (North Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized controlled trial protocol [O] . Laura V. Milko, Christine Rini, Megan A. Lewis, 2018

机译：在NC NEXUS（北卡罗来纳州新生儿外显子组测序通用筛查）研究中评估父母对孩子进行下一代测序的决定：一项随机对照试验方案
7. Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project [O] . Skinner, Debra, Choudhury, Summer, Sideris, John, 2011

机译：父母在一项试点研究项目中筛选新生儿进行FMR1基因扩增的决定
8. Sickle Cell Disease: Screening, Diagnosis, Management, and Counseling in Newborns and Infants. Clinical Practice Guideline Number 6; Sickle Cell Disease: Comprehensive Screening and Management in Newborns and Infants. Quick Reference Guide for Clinicians Number 6; Sickle Cell Disease in Newborns and Infants. A Guide for Parents [R] . 1993

机译：镰状细胞病：新生儿和婴儿的筛查，诊断，管理和咨询。临床实践指南第6号;镰状细胞病：新生儿和婴儿的综合筛查和管理。第6号临床医生快速参考指南;新生儿和婴儿的镰状细胞病。家长指南

Parents Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project

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