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Data sharing: A viable resource for future.数据共享:未来的可行资源。
Perspect Clin Res. 2017 Apr-Jun;8(2):63-67. doi: 10.4103/2229-3485.203036.
2
The project data sphere initiative: accelerating cancer research by sharing data.项目数据领域计划:通过数据共享加速癌症研究
Oncologist. 2015 May;20(5):464-e20. doi: 10.1634/theoncologist.2014-0431. Epub 2015 Apr 15.
3
Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India.汗水、怀疑与未知领域:对印度孟买公共卫生研究人员及研究参与者关于数据共享观点的定性研究
J Empir Res Hum Res Ethics. 2015 Jul;10(3):239-50. doi: 10.1177/1556264615592383.
4
"You cannot collect data using your own resources and put It on open access": Perspectives from Africa about public health data-sharing.“你不能利用自身资源收集数据并将其开放获取”:来自非洲关于公共卫生数据共享的观点。
Dev World Bioeth. 2018 Dec;18(4):394-405. doi: 10.1111/dewb.12159. Epub 2017 Jul 25.
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Whose data set is it anyway? Sharing raw data from randomized trials.这到底是谁的数据集?分享随机试验的原始数据。
Trials. 2006 May 16;7:15. doi: 10.1186/1745-6215-7-15.
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Clinical trials in radiology and data sharing: results from a survey of the European Society of Radiology (ESR) research committee.放射学临床试验和数据共享:欧洲放射学会(ESR)研究委员会调查结果。
Eur Radiol. 2019 Sep;29(9):4794-4802. doi: 10.1007/s00330-019-06105-y. Epub 2019 Feb 27.
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Share and protect our health data: an evidence based approach to rare disease patients' perspectives on data sharing and data protection - quantitative survey and recommendations.分享和保护我们的健康数据:基于证据的罕见病患者对数据共享和数据保护观点 - 定量调查和建议。
Orphanet J Rare Dis. 2019 Jul 12;14(1):175. doi: 10.1186/s13023-019-1123-4.
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District decision-making for health in low-income settings: a qualitative study in Uttar Pradesh, India, on engaging the private health sector in sharing health-related data.低收入环境下的地区卫生决策:印度北方邦关于促使私营卫生部门共享健康相关数据的一项定性研究
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Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders.制定南非公共卫生研究数据共享的道德规范:来自不同研究利益相关者样本的观点和经验。
J Empir Res Hum Res Ethics. 2015 Jul;10(3):290-301. doi: 10.1177/1556264615592386.
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Viewing benefit sharing in global health research through the lens of Aristotelian justice.从亚里士多德式正义的视角审视全球健康研究中的利益分享。
J Med Ethics. 2017 Jun;43(6):417-421. doi: 10.1136/medethics-2015-102858. Epub 2016 Oct 18.

引用本文的文献

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Measuring the Impact of Data Sharing: From Author-Level Metrics to Quantification of Economic and Non-tangible Benefits.衡量数据共享的影响:从作者层面指标到经济和非物质效益的量化
Cureus. 2023 Dec 11;15(12):e50308. doi: 10.7759/cureus.50308. eCollection 2023 Dec.
2
Useful and useless publications measured by bibliometrics and scientometrics in orthopaedic surgery. Are the relevance of a journal and publication metrics useful enough for the scientific promotion of surgeons?骨科手术中通过文献计量学和科学计量学衡量的有用和无用出版物。期刊的相关性和出版物指标对外科医生的科研晋升是否足够有用?
Int Orthop. 2020 Oct;44(10):1875-1879. doi: 10.1007/s00264-020-04803-7.
3
Hidden analyses: a review of reporting practice and recommendations for more transparent reporting of initial data analyses.隐藏分析:对报告实践的综述及对初始数据分析更透明报告的建议。
BMC Med Res Methodol. 2020 Mar 13;20(1):61. doi: 10.1186/s12874-020-00942-y.
4
Advancing good governance in data sharing and biobanking - international aspects.推进数据共享和生物样本库中的良好治理——国际层面
Wellcome Open Res. 2019 Nov 22;4:184. doi: 10.12688/wellcomeopenres.15540.1. eCollection 2019.
5
It is not enough that we require data to be shared; we have to make sharing easy, feasible and accessible too!仅仅要求共享数据是不够的;我们还必须让共享变得轻松、可行且易于实现!
BMJ Glob Health. 2019 Jul 22;4(4):e001550. doi: 10.1136/bmjgh-2019-001550. eCollection 2019.

本文引用的文献

1
Sharing Clinical Trial Data: A Proposal from the International Committee of Medical Journal Editors.分享临床试验数据:来自国际医学期刊编辑委员会的一项提议。
Chin Med J (Engl). 2016 Jan 20;129(2):127-8. doi: 10.4103/0366-6999.173420.
2
Scientists in the dark after French clinical trial proves fatal.法国临床试验证明致命后,科学家们蒙在鼓里。
Nature. 2016 Jan 21;529(7586):263-4. doi: 10.1038/nature.2016.19189.
3
Sharing individual patient data from clinical trials.分享来自临床试验的个体患者数据。
Perspect Clin Res. 2015 Apr-Jun;6(2):71-2. doi: 10.4103/2229-3485.153996.
4
A systematic review of barriers to data sharing in public health.一项关于公共卫生领域数据共享障碍的系统综述。
BMC Public Health. 2014 Nov 5;14:1144. doi: 10.1186/1471-2458-14-1144.
5
European Medicines Agency changes policy on clinical trial data publication.欧洲药品管理局改变临床试验数据发布政策。
BMJ. 2014 Jun 17;348:g4073. doi: 10.1136/bmj.g4073.
6
Preparing for responsible sharing of clinical trial data.为临床试验数据的负责任共享做准备。
N Engl J Med. 2013 Oct 24;369(17):1651-8. doi: 10.1056/NEJMhle1309073. Epub 2013 Oct 21.
7
Data sharing among data monitoring committees and responsibilities to patients and science.数据监测委员会之间的数据共享以及对患者和科学的责任。
Trials. 2013 Apr 19;14:102. doi: 10.1186/1745-6215-14-102.
8
The importance of clinical trial data sharing: toward more open science.临床试验数据共享的重要性:迈向更开放的科学。
Circ Cardiovasc Qual Outcomes. 2012 Mar 1;5(2):238-40. doi: 10.1161/CIRCOUTCOMES.112.965798.
9
Publication of NIH funded trials registered in ClinicalTrials.gov: cross sectional analysis.美国国立卫生研究院资助的临床试验在 ClinicalTrials.gov 上的发表情况:横断面分析。
BMJ. 2012 Jan 3;344:d7292. doi: 10.1136/bmj.d7292.
10
Data sharing: not as simple as it seems.数据共享:并非看上去那么简单。
Environ Health. 2011 Dec 21;10:107. doi: 10.1186/1476-069X-10-107.

数据共享:未来的可行资源。

Data sharing: A viable resource for future.

作者信息

Singh Kritarth Naman M, Shetty Yashashri C

机构信息

Department of Pharmacology and Therapeutics, Seth G.S. Medical College and K.E.M. Hospital, Mumbai, Maharashtra, India.

出版信息

Perspect Clin Res. 2017 Apr-Jun;8(2):63-67. doi: 10.4103/2229-3485.203036.

DOI:10.4103/2229-3485.203036
PMID:28447015
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5384401/
Abstract

Clinical trials and research studies are being conducted worldwide at a rampant pace leading to generation of large amount of data. However, to reap the benefits of the data generated it is important that this data is shared with the general public without which it can be deemed useless. Despite its importance being known to us, data sharing does not come without its share of problems and it is not as easy to execute as it sounds on-paper. Over the past few years, multiple coveted organizations around the world involved in research activities have come up with their respective guidelines and initiatives to make sure the sharing of research data is smooth and ethical. Developing countries like India have made a few strides in the right direction with some initiatives in-place, but there still seems a long way to go before unanimous data sharing can be a reality. The stakeholders may have to face certain possible repercussions due to data sharing but there is no doubt that if done in the right way, it can lead to universal development.

摘要

全球范围内,临床试验和研究正在迅猛开展,产生了大量数据。然而,要从所产生的数据中获益,重要的是将这些数据与公众共享,否则数据可能被视为无用。尽管我们知道数据共享很重要,但它并非没有问题,而且执行起来并不像书面听起来那么容易。在过去几年里,世界各地多个参与研究活动的令人垂涎的组织已经出台了各自的指导方针和举措,以确保研究数据的共享顺利且合乎道德。像印度这样的发展中国家已经通过一些已实施的举措在正确的方向上取得了一些进展,但在实现一致的数据共享成为现实之前,似乎仍有很长的路要走。利益相关者可能会因数据共享而面临某些可能的影响,但毫无疑问,如果以正确的方式进行,它可以带来普遍发展。