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Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research.患者对分享医疗数据和生物样本用于研究的决策的看法。
JAMA Netw Open. 2019 Aug 2;2(8):e199550. doi: 10.1001/jamanetworkopen.2019.9550.
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Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.公众对生物样本库研究中的知情同意和数据共享的态度:美国一项大型多地点实验性调查
Am J Hum Genet. 2017 Mar 2;100(3):414-427. doi: 10.1016/j.ajhg.2017.01.021. Epub 2017 Feb 9.
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Demographic differences in willingness to provide broad and narrow consent for biobank research.生物样本库研究中提供广义和狭义同意意愿的人口统计学差异。
Biopreserv Biobank. 2015 Apr;13(2):98-106. doi: 10.1089/bio.2014.0032. Epub 2015 Mar 31.
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National health and nutrition examination survey: sample design, 2011-2014.国家健康与营养检查调查:样本设计,2011 - 2014年
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Prevalence of seropositivity to pandemic influenza A/H1N1 virus in the United States following the 2009 pandemic.2009 年大流行后美国人群中抗大流行流感 A/H1N1 病毒血清阳性率。
PLoS One. 2012;7(10):e48187. doi: 10.1371/journal.pone.0048187. Epub 2012 Oct 31.
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Consent for future genetic research: the NHANES experience in 2007-2008.未来基因研究的同意书:2007 - 2008年美国国家健康与营养检查调查(NHANES)的经验
IRB. 2011 Jan-Feb;33(1):9-14.
7
Consent for genetic research in a general population: an update on the National Health and Nutrition Examination Survey experience.普通人群中基因研究的知情同意:国家健康与营养检查调查经验的最新情况
Genet Med. 2006 Jun;8(6):354-60. doi: 10.1097/01.gim.0000223552.70393.08.
8
Consent for genetic research in a general population: the NHANES experience.普通人群中基因研究的同意书:美国国家健康与营养检查调查的经验
Genet Med. 2003 Jan-Feb;5(1):35-42. doi: 10.1097/00125817-200301000-00006.

在回复率不断下降的时代评估对健康调查组成部分的同意情况及回复情况:2011 - 2018年国家健康与营养检查调查

Assessing consent for and response to health survey components in an era of falling response rates: National Health and Nutrition Examination Survey, 2011-2018.

作者信息

McQuillan Geraldine, Kruszon-Moran Deanna, Di Hua, Schaar Denise, Lukacs Susan, Fakhouri Tala, Paulose-Ram Ryne

机构信息

Centers for Disease Control and Prevention, Hyattsville, U.S.A.

出版信息

Surv Res Methods. 2021 Aug 19;15(3):257-268. doi: 10.18148/srm/2021.v15i3.7774.

DOI:10.18148/srm/2021.v15i3.7774
PMID:37201135
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10191170/
Abstract

Response rates for national population-based surveys have declined, including the National Health and Nutrition Examination Survey (NHANES). Declining response to the initial NHANES interview may impact consent and participation in downstream survey components such as record linkage, physical exams, storage of biological samples and phlebotomy. Interview response rates dropped from 68% in 2011-2012 to 53% in 2017-2018 for adults age 18 and older. Response was higher for children (1-17 years) but with a similar downward trend (2011-2012, 81%; 2017-2018, 65%). Despite declining interview response rates, changes in consent and response rates for downstream components over time have been mixed. Among those interviewed, the examination response rate was over 93%, consent for record linkage was over 90%, and consent for storage of specimens for future research was over 99%. The availability of a blood sample for storage ranged between 60%-65% for children and 78%-85% for adults.

摘要

包括国家健康和营养检查调查(NHANES)在内的全国性基于人口的调查的回应率有所下降。对NHANES初始访谈回应率的下降可能会影响下游调查环节的同意率和参与度,如下游调查环节包括记录链接、体格检查、生物样本储存和静脉穿刺采血。18岁及以上成年人的访谈回应率从2011 - 2012年的68%降至2017 - 2018年的53%。儿童(1 - 17岁)的回应率较高,但也呈现类似的下降趋势(2011 - 2012年为81%;2017 - 2018年为65%)。尽管访谈回应率下降,但随着时间推移,下游环节的同意率和回应率变化不一。在接受访谈的人群中,检查回应率超过93%,记录链接同意率超过90%,为未来研究储存标本的同意率超过99%。儿童可用于储存的血样比例在60% - 65%之间,成人为78% - 85%。