Patient registries: useful tools for clinical research in myasthenia gravis
Patient registries: useful tools for clinical research in myasthenia gravis
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DOI：
10.1111/j.1749-6632.2012.06771.x
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发表时间：
2012-01-01
期刊：
影响因子：
--
通讯作者：
Sanders, Donald
中科院分区：
文献类型：
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作者：
Baggi, Fulvio;Mantegazza, Renato;Sanders, Donald
临床登记可以通过以下几种方式促进重症肌无力（MG）的研究：作为大量患有这种罕见疾病的患者的人口统计学，临床，生物学和免疫学数据的来源;作为临床试验的转诊来源;以及允许快速识别具有特定特征的MG患者。医生来源的登记具有纳入诊断和治疗数据的额外优势，可以比较不同治疗方法的结局，并可以补充患者自我报告的数据。我们报告了两个大型医生来源的登记处（杜克大学医学中心的杜克MG患者登记处和Istituto Neurologico Carlo Besta的INNCB MG登记处）MG患者的人口统计学分析，作为评估两个数据集一致性的初步研究。这些登记系统共享一个共同的结构，具有共同数据元素（CDE）的内核，便于数据分析。CDE与国家神经疾病和卒中通用数据元素项目研究所开发的MG特异性CDE一致。
Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician-derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self-reported data. We report the demographic analysis of MG patients in two large physician-derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG-specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project.