'IRDiRC Recognized Resources': a new mechanism to support scientists to conduct efficient, high-quality research for rare diseases.
'IRDiRC Recognized Resources': a new mechanism to support scientists to conduct efficient, high-quality research for rare diseases.
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“ IRDIRC认可资源”：一种新机制，旨在支持科学家对罕见疾病进行高效，高质量的研究。
DOI：
10.1038/ejhg.2016.137
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发表时间：
2017-02
期刊：
影响因子：
--
通讯作者：
Boycott KM
中科院分区：
文献类型：
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作者：
Lochmüller H;Le Cam Y;Jonker AH;Lau LP;Baynam G;Kaufmann P;Lasko P;Dawkins HJ;Austin CP;Boycott KM
国际罕见病研究联盟（IRDiRC）创建了一个质量标签，“IRDiRC认可的资源”，以前称为“IRDiRC推荐”。这是一个基于IRDiRC政策和指南建立的同行评审质量指标流程，旨在指定资源（即标准、指南、工具和平台），以加快罕见病（RD）研究界的发现和转化为临床应用的步伐。在其实施的第一年，13个资源成功地申请了这一指定，每一个都集中在对IRDiRC目标和更广泛的RD研究领域至关重要的关键领域。这些包括数据共享的发现，知识组织和本体，网络患者登记，和治疗的发展。“IRDiRC认可资源”是一种机制，旨在为RD研究提供社区认可的贡献，提高知名度，并鼓励研究人员采用公认的标准，指南，工具和平台，以促进以互操作性和共享原则为指导的研究进展。
The International Rare Diseases Research Consortium (IRDiRC) has created a quality label, ‘IRDiRC Recognized Resources', formerly known as ‘IRDiRC Recommended'. It is a peer-reviewed quality indicator process established based on the IRDiRC Policies and Guidelines to designate resources (ie, standards, guidelines, tools, and platforms) designed to accelerate the pace of discoveries and translation into clinical applications for the rare disease (RD) research community. In its first year of implementation, 13 resources successfully applied for this designation, each focused on key areas essential to IRDiRC objectives and to the field of RD research more broadly. These included data sharing for discovery, knowledge organisation and ontologies, networking patient registries, and therapeutic development. ‘IRDiRC Recognized Resources' is a mechanism aimed to provide community-approved contributions to RD research higher visibility, and encourage researchers to adopt recognised standards, guidelines, tools, and platforms that facilitate research advances guided by the principles of interoperability and sharing.