Giannella Emilia, Notarangelo Valentino, Motta Caterina, Sancesario Giulia
Biobank, IRCCS Santa Lucia Foundation, Rome, Italy.
Experimental Neuroscience, European Center for Brain Research, Rome, Italy.
Neuroscientist. 2023 Apr;29(2):190-201. doi: 10.1177/10738584211036693. Epub 2021 Aug 5.
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.
生物样本库已成为通过转化研究来促进神经疾病知识发展的一项战略挑战。由于中枢神经系统难以触及，生物样本库作为收集生物样本及相关数据的机构，对于将实验结果转化为临床实践至关重要。基础研究、组学科学和计算机模拟研究的结果，绝对需要在临床明确界定的患者队列中进行验证，若为纵向研究，或纳入临床前和无症状个体，则更具价值。最后，收集生物样本需要付出巨大努力，以确保尊重透明度并保护患者和捐赠者的敏感数据。自2016/679号《欧洲通用数据保护条例》获批以来，人们对生物医学研究中数据的使用产生了担忧。在这篇叙述性综述中，我们重点关注生物样本库在神经退行性疾病转化研究中的重要作用。此外，我们还讨论了生物样本和数据收集的注意事项、分析前阶段标准化的重要性、数据保护（伦理和法律方面）以及捐赠者在改进该领域研究中的作用。
