为临床测序证据生成研究联盟基因组学项目创建无障碍西班牙语材料:挑战与经验教训。

IF 1.7 4区 医学 Q3 PHARMACOLOGY & PHARMACY Personalized medicine Pub Date : 2021-09-01 Epub Date: 2021-08-27 DOI:10.2217/pme-2020-0075
Nangel M Lindberg, Amanda M Gutierrez, Kathleen F Mittendorf, Michelle A Ramos, Beatriz Anguiano, Frank Angelo, Galen Joseph
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引用次数: 0

摘要

目的:为了提高西班牙语使用者在基因组学研究中的代表性,必须以西班牙语提供有关基因主题的易读研究材料。材料与方法:临床测序证据生成研究联盟正在评估服务不足人群的基因组测序。所有研究机构都需要将招募材料、调查问卷和结果反馈翻译成西班牙语。结果:我们介绍了我们翻译特定研究机构材料的过程,以及各研究机构的共享措施,以便为今后让讲西班牙语的人参与研究提供信息。结论在为全美大约 1000 名讲西班牙语的人翻译和改编研究材料,以及协调不同研究机构的翻译措施的过程中,我们克服了重重困难。翻译工作应由专业人员完成。研究必须分配足够的时间、精力和预算来翻译和调整参与者材料。
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Creating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned.

Aim: To increase Spanish speakers' representation in genomics research, accessible study materials on genetic topics must be made available in Spanish. Materials & methods: The Clinical Sequencing Evidence-Generating Research consortium is evaluating genome sequencing for underserved populations. All sites needed Spanish translation of recruitment materials, surveys and return of results. Results: We describe our process for translating site-specific materials, as well as shared measures across sites, to inform future efforts to engage Spanish speakers in research. Conclusion: In translating and adapting study materials for roughly 1000 Spanish speakers across the USA, and harmonizing translated measures across diverse sites, we overcame numerous challenges. Translation should be performed by professionals. Studies must allocate sufficient time, effort and budget to translate and adapt participant materials.

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来源期刊
Personalized medicine
Personalized medicine 医学-药学
CiteScore
3.30
自引率
4.30%
发文量
49
审稿时长
6-12 weeks
期刊介绍: Personalized Medicine (ISSN 1741-0541) translates recent genomic, genetic and proteomic advances into the clinical context. The journal provides an integrated forum for all players involved - academic and clinical researchers, pharmaceutical companies, regulatory authorities, healthcare management organizations, patient organizations and others in the healthcare community. Personalized Medicine assists these parties to shape thefuture of medicine by providing a platform for expert commentary and analysis. The journal addresses scientific, commercial and policy issues in the field of precision medicine and includes news and views, current awareness regarding new biomarkers, concise commentary and analysis, reports from the conference circuit and full review articles.
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