IgA nephropathy databank: Development of a system for management of renal biopsy acquired data
IgA nephropathy databank: Development of a system for management of renal biopsy acquired data
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DOI：
10.1016/s0272-6386(97)90455-8
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发表时间：
1997-06-01
影响因子：
13.2
通讯作者：
Glassock, RJ
中科院分区：
文献类型：
--
作者：
Wyatt, RJ;Emancipator, SN;Glassock, RJ
伊加肾病（IgAN）患者的识别和随访的综合系统的发展将更好地建立IgAN作为终末期肾病（ESRD）的原因的重要性;提供一个现成的资源来测试关于IgAN的发病机制，自然史和可能的治疗干预的假设;并获得关于IgAN在美国的流行病学数据。1996年4月12日和13日，一组肾脏病理学家和肾病学家在田纳西州孟菲斯的医学教育和研究所开会，讨论IgAN区域数据库的开发，并就如何在该数据库中管理肾活检数据达成共识。术语“数据库”而不是“登记处”用来强调的概念，即存储在数据库中的信息是为了访问所有严重的调查人员感兴趣的IgAN。Julian与肯塔基州、田纳西州、亚拉巴马和密西西比四州地区的许多肾脏病理学家和肾病学家合作，已经确定了该地区许多已知的IgAN病例。在孟菲斯建立了IgAN数据库，用于输入这些患者的临床数据。在本次会议召开时，该地区已确定了987名患者，
The DEVELOPMENT of comprehensive systems for the identification and follow-up of patients with IgA nephropathy (IgAN) will better establish the importance of IgAN as a cause of end-stage renal disease (ESRD); provide a readily available resource for testing hypotheses about the pathogenesis, natural history, and possible treatment interventions for IgAN; and gain epidemiologic data about IgAN in the United States. On April 12 and 13, 1996, a group of renal pathologists and nephrologists met at the Medical Education and Research Institute in Memphis, TN, to discuss the development of a regional databank for IgAN and to reach a consensus on how renal biopsy data will be managed in that databank. The term “databank” is used instead of “registry” to emphasize the concept that the information stored in the database is meant to be accessible to all serious investigators interested in IgAN.For over 15 years, Drs Robert J. Wyatt and Bruce A. Julian, with the collaboration of many renal pathologists and nephrologists in the fourstate region of Kentucky, Tennessee, Alabama, and Mississippi, have identified many of the known cases of IgAN in the region. The IgAN databank has been established in Memphis for entry of the clinical data for these patients. At the time of this conference, 987 patients from this region had been identified, and clinical data