神经退行性疾病的生物银行:转化研究和数据隐私的挑战。

IF 3.5 3区 医学 Q1 CLINICAL NEUROLOGY Neuroscientist Pub Date : 2023-04-01 DOI:10.1177/10738584211036693
Emilia Giannella, Valentino Notarangelo, Caterina Motta, Giulia Sancesario
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引用次数: 2

摘要

通过应用转化研究,生物银行已成为促进神经系统疾病知识的战略挑战。由于中枢神经系统的不可访问性,作为收集生物标本和相关数据的结构,生物银行的出现对于将实验结果转化为临床实践至关重要。来自基础研究、组学科学和计算机研究的发现,肯定需要在临床定义明确的患者队列中进行验证,如果是纵向的,或者包括临床前和无症状个体,则更有价值。最后,收集生物样本需要付出很大努力,以保证尊重透明度并保护患者和捐赠者的敏感数据。自欧洲通用数据保护条例2016/679获得批准以来,人们对生物医学研究中数据使用的担忧已经出现。在这篇叙述性综述中,我们将重点介绍生物银行在神经退行性疾病转化研究中的重要作用。此外,我们还讨论了对生物样本和数据收集的考虑,分析前阶段标准化的重要性,数据保护(道德和法律)以及捐助者在改进该领域研究中的作用。
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Biobanking for Neurodegenerative Diseases: Challenge for Translational Research and Data Privacy.

Biobanking has emerged as a strategic challenge to promote knowledge on neurological diseases, by the application of translational research. Due to the inaccessibility of the central nervous system, the advent of biobanks, as structure collecting biospecimens and associated data, are essential to turn experimental results into clinical practice. Findings from basic research, omics sciences, and in silico studies, definitely require validation in clinically well-defined cohorts of patients, even more valuable when longitudinal, or including preclinical and asymptomatic individuals. Finally, collecting biological samples requires a great effort to guarantee respect for transparency and protection of sensitive data of patients and donors. Since the European General Data Protection Regulation 2016/679 has been approved, concerns about the use of data in biomedical research have emerged. In this narrative review, we focus on the essential role of biobanking for translational research on neurodegenerative diseases. Moreover, we address considerations for biological samples and data collection, the importance of standardization in the preanalytical phase, data protection (ethical and legal) and the role of donors in improving research in this field.

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来源期刊
Neuroscientist
Neuroscientist 医学-临床神经学
CiteScore
11.50
自引率
0.00%
发文量
68
期刊介绍: Edited by Stephen G. Waxman, The Neuroscientist (NRO) reviews and evaluates the noteworthy advances and key trends in molecular, cellular, developmental, behavioral systems, and cognitive neuroscience in a unique disease-relevant format. Aimed at basic neuroscientists, neurologists, neurosurgeons, and psychiatrists in research, academic, and clinical settings, The Neuroscientist reviews and updates the most important new and emerging basic and clinical neuroscience research.
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