Developing a data sharing community for spinal cord injury research.
Developing a data sharing community for spinal cord injury research.
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DOI：
10.1016/j.expneurol.2017.05.012
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发表时间：
2017-09
影响因子：
5.3
通讯作者：
FAIR Share Workshop Participants
中科院分区：
文献类型：
--
作者：
Callahan A;Anderson KD;Beattie MS;Bixby JL;Ferguson AR;Fouad K;Jakeman LB;Nielson JL;Popovich PG;Schwab JM;Lemmon VP;FAIR Share Workshop Participants
数据共享的快速增长为整个生物医学研究领域提供了新的机会。全球正在努力制定实施数据共享和开放数据资源的实用指南。其中包括最近的“公平数据原则”的建议，该原则主张，如果数据具有广泛的科学价值，那么数据的数字表示应该是可查找的、可访问的、可互操作的和可重用的（FAIR）1。脊髓损伤（SCI）研究领域有着悠久的合作历史，包括共享临床前研究模型和结果测量。此外，SCI研究界正在开发新的工具和资源，以增加数据共享和访问的机会。考虑到这一点，美国国立卫生研究院（NIH）的国家神经疾病和中风研究所（NINDS）与脊髓损伤开放数据共享（ODC-SCI）合作，于2016年10月5日至6日在马里兰州贝塞斯达举办了题为“临床前SCI数据：创建公平共享社区”的研讨会。研讨会的受邀者由研讨会指导委员会提名（联合主席：ARF和VPL；成员：AC， KDA， MSB， KF， LBJ， PGP， JMS），汇集了来自学术界和工业界的初级和高级专家，包括临床前和基础SCI研究人员，数据科学和生物信息学专家，其他神经系统疾病领域的专家，临床研究人员，SCI社区成员，以及代表联邦和私人资助机构的项目工作人员。研讨会和ODC-SCI工作由国际脊柱研究信托基金（ISRT）、里克·汉森研究所、生命之翼、克雷格·h·尼尔森基金会和NINDS赞助。与会者人数有限，以确保小组积极参与和反馈。目的是研究SCI研究中数据共享的现状，并为其未来提供一条道路。以下是研讨会的亮点，包括对SCI研究中数据共享价值的看法，研讨会参与者的观点和关注点，对现有资源的描述以及进一步参与SCI研究界的可操作方向，该模型可能适用于许多其他神经科学领域。本文旨在与更广泛的研究界分享这些初步发现，并为SCI领域的持续反馈提供谈话点，因为它在数据共享时代继续向前发展。
The rapid growth in data sharing presents new opportunities across the spectrum of biomedical research. Global efforts are underway to develop practical guidance for implementation of data sharing and open data resources. These include the recent recommendation of ‘FAIR Data Principles’, which assert that if data is to have broad scientific value, then digital representations of that data should be Findable, Accessible, Interoperable and Reusable (FAIR)1. The spinal cord injury (SCI) research field has a long history of collaborative initiatives tat include sharing of preclinical research models and outcome measures. In addition, new tools and resources are being developed by the SCI research community to enhance opportunities for data sharing and access. With this in mind, the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) hosted a workshop on October 5–6, 2016 in Bethesda, MD, in collaboration with the Open Data Commons for Spinal Cord Injury (ODC-SCI) titled “Preclinical SCI Data: Creating a FAIR Share Community”. Workshop invitees were nominated by the workshop steering committee (co-chairs: ARF and VPL; members: AC, KDA, MSB, KF, LBJ, PGP, JMS), to bring together junior and senior level experts including preclinical and basic SCI researchers from academia and industry, data science and bioinformatics experts, investigators with expertise in other neurological disease fields, clinical researchers, members of the SCI community, and program staff representing federal and private funding agencies. The workshop and ODC-SCI efforts were sponsored by the International Spinal Research Trust (ISRT), the Rick Hansen Institute, Wings for Life, the Craig H. Neilsen Foundation and NINDS. The number of attendees was limited to ensure active participation and feedback in small groups. The goals were to examine the current landscape for data sharing in SCI research and provide a path to its future. Below are highlights from the workshop, including perspectives on the value of data sharing in SCI research, workshop participant perspectives and concerns, descriptions of existing resources and actionable directions for further engaging the SCI research community in a model that may be applicable to many other areas of neuroscience. This manuscript is intended to share these initial findings with the broader research community, and to provide talking points for continued feedback from the SCI field, as it continues to move forward in the age of data sharing.
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