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本文引用的文献

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Factors influencing patient willingness to participate in genetic research after a myocardial infarction.影响心肌梗死后患者参与基因研究意愿的因素。
Genome Med. 2011 Jun 15;3(6):39. doi: 10.1186/gm255.
2
Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar.增加非裔美国家庭参与基因研究的比例:从“糖计划”中汲取的经验教训。
J Community Genet. 2010 Sep;1(3):125-32. doi: 10.1007/s12687-010-0017-x.
3
Research ethics. Research practice and participant preferences: the growing gulf.研究伦理。研究实践与参与者偏好:日益扩大的差距。
Science. 2011 Jan 21;331(6015):287-8. doi: 10.1126/science.1199000.
4
Consent for genetic research in the Framingham Heart Study.弗雷明汉心脏研究中的遗传研究同意书。
Am J Med Genet A. 2010 May;152A(5):1250-6. doi: 10.1002/ajmg.a.33377.
5
Public opinion about the importance of privacy in biobank research.公众对生物样本库研究中隐私重要性的看法。
Am J Hum Genet. 2009 Nov;85(5):643-54. doi: 10.1016/j.ajhg.2009.10.002. Epub 2009 Oct 29.
6
Successful strategies for increasing African American participation in cancer genetic studies: hopeful signs for equalizing the benefits of genetic medicine.提高非裔美国人参与癌症基因研究的成功策略:实现基因医学益处平等的希望迹象。
Community Genet. 2008;11(4):208-14. doi: 10.1159/000116881. Epub 2008 Apr 14.
7
Consent for genetics studies among clinical trial participants: findings from Action for Health in Diabetes (Look AHEAD).糖尿病健康行动(展望)研究中临床试验参与者对遗传学研究的同意情况:研究结果
Clin Trials. 2006;3(5):443-56. doi: 10.1177/1740774506070727.
8
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.
9
A community-driven model of research participation: the Jackson Heart Study Participant Recruitment and Retention Study.一种由社区驱动的研究参与模式:杰克逊心脏研究参与者招募与保留研究
Ethn Dis. 2003 Fall;13(4):438-55.
10
Racial differences in factors that influence the willingness to participate in medical research studies.影响参与医学研究意愿的因素中的种族差异。
Ann Epidemiol. 2002 May;12(4):248-56. doi: 10.1016/s1047-2797(01)00265-4.

招募站点是否是优化遗传研究参与度的关键?

Are enrollment sites the key to optimizing participation in genetic studies?

机构信息

Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, SE-171 77 Stockholm, Sweden.

出版信息

Genome Med. 2011 Jun 28;3(6):41. doi: 10.1186/gm257.

DOI:10.1186/gm257
PMID:21722348
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3218815/
Abstract

In a time when the challenge of people being over-researched and experiencing research fatigue is increasingly discussed, low participation rates and potential sample biases are a growing concern in genetic research. In a recent study assessing factors relevant to successful recruitment of patients with myocardial infarction to a genetic study, enrollment site was identified as the most important factor associated with patient participation, whereas patient-level factors such as race, gender and education played a limited or no role. These results underline the importance of appropriate recruitment routines at enrollment sites in order to reach high levels of participation in genetic research.See research article: http://genomemedicine.com/content/3/6/39.

摘要

在人们过度研究和经历研究疲劳的挑战日益受到讨论的时代,低参与率和潜在的样本偏差是遗传研究中越来越令人关注的问题。在最近一项评估与成功招募心肌梗死患者参加遗传研究相关因素的研究中,入组地点被确定为与患者参与度最相关的最重要因素,而患者层面的因素,如种族、性别和教育程度,则作用有限或没有作用。这些结果强调了在入组地点制定适当的招募程序以达到遗传研究高参与率的重要性。参见研究文章:http://genomemedicine.com/content/3/6/39.