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一项为开发临床前脊髓损伤研究通用数据元素而开展的社区工作。

A Community Effort to Develop Common Data Elements for Pre-Clinical Spinal Cord Injury Research.

作者信息

Fedor Britt A, Torres-Espin Abel, Vavrek Romana, Martone Maryann E, Bixby John L, Gensel John C, Lemmon Vance, Grethe Jeffrey S, Huie J Russel, Ferguson Adam R, Fouad Karim

机构信息

Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.

Neuroscience and Mental Health Institute, University of Alberta, Edmonton, Canada.

出版信息

Neurotrauma Rep. 2025 Apr 28;6(1):391-401. doi: 10.1089/neur.2025.0021. eCollection 2025.

Abstract

For nearly 350 years, the process of disseminating scientific knowledge has remained largely unchanged. Scientists conduct experiments, analyze the data, and publish their findings in the form of scientific articles. Since the turn of the century, this process has been challenged by numerous open science and data sharing efforts to enhance transparency, reproducibility, and replicability of scientific research. Big data approaches, together with machine learning and artificial intelligence, are frequently used to gain insight into the ever-growing complexity of biological systems and biomedical research. To utilize these approaches and harness the continuously increasing computational power requires data to be both machine readable and, ideally, harmonized across studies. Therein lies the challenge: understanding how to organize and describe data is a critical skill for scientists, yet one that is rarely explicitly taught. Common data elements (CDEs), standardized definitions, and reporting structures for data represent a practical solution to this challenge. With the goal of creating a common language to describe and share pre-clinical spinal cord injury (SCI) research data, the open data commons for SCI, in collaboration with the National Institute of Neurological Disorders and Stroke, kicked off this process with the "Preclinical SCI Common Data Elements (CDE) Workshop," held in conjunction with the National Neurotrauma Symposium in San Francisco, California in June 2024. In this report, we discuss the workshop proceedings, summarize the input provided by the SCI research community, share insights from related CDE efforts, and provide a pragmatic approach to creating CDEs for pre-clinical SCI research.

摘要

在近350年的时间里,科学知识的传播过程基本保持不变。科学家进行实验、分析数据,并以科学文章的形式发表他们的研究成果。自世纪之交以来,这一过程受到了众多开放科学和数据共享努力的挑战,这些努力旨在提高科学研究的透明度、可重复性和可再现性。大数据方法,连同机器学习和人工智能,经常被用于洞察生物系统和生物医学研究日益增长的复杂性。为了利用这些方法并驾驭不断增长的计算能力,要求数据既机器可读,理想情况下,还能在各项研究中保持协调一致。挑战就在于此:理解如何组织和描述数据是科学家的一项关键技能,但却很少有明确的教学指导。通用数据元素(CDE)、标准化定义以及数据报告结构是应对这一挑战的切实可行的解决方案。为了创建一种描述和共享临床前脊髓损伤(SCI)研究数据的通用语言,SCI开放数据共享库与美国国立神经疾病和中风研究所合作,于2024年6月在加利福尼亚州旧金山与全国神经创伤研讨会联合举办了“临床前SCI通用数据元素(CDE)研讨会”,开启了这一进程。在本报告中,我们讨论了研讨会的议程,总结了SCI研究界提供的意见,分享了相关CDE工作的见解,并提供了一种为临床前SCI研究创建CDE的务实方法。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/388b/12408885/3d2a138b86ca/neur.2025.0021_figure1.jpg

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