Common data elements in epilepsy research: development and implementation of the NINDS epilepsy CDE project.
Common data elements in epilepsy research: development and implementation of the NINDS epilepsy CDE project.
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DOI：
10.1111/j.1528-1167.2011.03018.x
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发表时间：
2011-06
期刊：
影响因子：
5.6
通讯作者：
Stout A
中科院分区：
文献类型：
--
作者：
Loring DW;Lowenstein DH;Barbaro NM;Fureman BE;Odenkirchen J;Jacobs MP;Austin JK;Dlugos DJ;French JA;Gaillard WD;Hermann BP;Hesdorffer DC;Roper SN;Van Cott AC;Grinnon S;Stout A
通用数据元素（CDE）项目由美国国家神经疾病和中风研究所（NINDS）于2006年发起，旨在制定执行资助的神经科学相关临床研究的标准。CDE旨在标准化数据收集的各个方面，减少研究启动时间，并在特定疾病领域的研究中提供更完整、全面和等效的数据。因此，CDE将简化NINDS资助的临床研究的数据共享和数据汇总，并在适当情况下促进循证指南和建议的制定。在9个内容领域建立了癫痫特异性CDE：（1）抗癫痫药物（AED）和其他抗癫痫治疗（AEDs），（2）合并症，（3）电生理学，（4）成像，（5）神经学检查，（6）神经心理学，（7）生活质量，（8）癫痫发作和癫痫发作，以及（9）手术和病理学。CDE是作为一种动态资源开发的，将根据研究者使用、新技术和记录新出现的危重疾病特征的研究结果提供建议。癫痫特异性CDE倡议可以被视为更大的国际运动的一部分，旨在促进癫痫的沟通和研究工作的临床疾病表征和结果评估的“协调”。这也将为CDE的进一步发展、完善和实施提供有价值的指导。本文介绍了NINDS CDE倡议，用于开发癫痫CDE的过程，以及CDE对临床研究者和NINDS的益处。
The Common Data Element (CDE) Project was initiated in 2006 by the National Institute of Neurological Disorders and Stroke (NINDS) to develop standards for performing funded neuroscience-related clinical research. CDEs are intended to standardize aspects of data collection, decrease study start-up time, and provide more complete, comprehensive, and equivalent data across studies within a particular disease area. Therefore, CDEs will simplify data sharing and data aggregation across NINDS-funded clinical research, and where appropriate, facilitate the development of evidenced-based guidelines and recommendations. Epilepsy-specific CDEs were established in nine content areas: (1) Antiepileptic Drugs (AEDs) and Other Antepileptic Therapies (AETs), )2) Comorbidities, (3) Electrophysiology, (4) Imaging,(5) Neurological Exam, (6) Neuropsychology,(7) Quality of Life, (8) Seizures and Syndromes, and (9) Surgery and Pathology. CDEs were developed as a dynamic resource that will accommodate recommendations based on investigator use, new technologies, and research findings documenting emerging critical disease characteristics. The epilepsy-specific CDE initiative can be viewed as part of the larger international movement toward “harmonization” of clinical disease characterization and outcome assessment designed to promote communication and research efforts in epilepsy. It will also provide valuable guidance for CDE improvement during their further development, refinement, and implementation. This article describes the NINDS CDE Initiative, the process used in developing Epilepsy CDEs, and the benefits of CDEs for the clinical investigator and NINDS.
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