Creutzfeldt-Jakob Disease Lookback Dataset (CJDLD)

<p>The tracking system is for patients identified in the Creutzfeldt Jakob Disease (CJD) lookback notification initiative established in January 1995 as part of the lookback notification of all Department of Veterans Affairs (VA) patients who may have received certain lot numbers of blood derivatives or blood components produced from donors with CJD. Even though the Centers of Disease Control and Prevention characterized the risk of transmission of CJD from blood derivative products as 'small and immeasurable' and 'theoretical', VA believed it had an ethical obligation to inform patients of the exposure to potentially contaminated blood components or plasma derivative products while under VA's care. The patients were notified. The Veterans Health Administration (VHA) established a tracking system for individuals who received these products to determine if there was an increase in VA CJD cases. Every two years, the VHA National Infectious Diseases Service updates the status of patients who had previously been identified through the VA CJD lookback notification initiative. The Creutzfeldt-Jakob Disease Lookback Dataset (CJDLD) is a prospective collection of data; requests for individual reports are not accepted.</p>

本追踪系统针对1995年1月启动的克雅氏病（Creutzfeldt Jakob Disease, CJD）回溯通知计划中确认的患者，该计划作为美国退伍军人事务部（Department of Veterans Affairs, VA）所有可能接受过特定批次、由克雅氏病供体生产的血液衍生物或血液成分的患者回溯通知工作的一部分。尽管美国疾病控制与预防中心（Centers for Disease Control and Prevention）将血液衍生制品传播克雅氏病的风险描述为“微小且无法量化”且“仅为理论层面”，但退伍军人事务部仍认为其负有伦理义务，需告知在本部门接受诊疗期间曾接触潜在受污染血液成分或血浆衍生制品的患者。相关患者均已收到通知。美国退伍军人健康管理局（Veterans Health Administration, VHA）为接受过上述制品的人员建立了追踪系统，以监测退伍军人事务部管辖范围内克雅氏病病例是否出现上升。美国退伍军人健康管理局国家传染病服务处每两年更新一次此前通过退伍军人事务部克雅氏病回溯通知计划确认的患者的状态信息。本克雅氏病回溯数据集（Creutzfeldt-Jakob Disease Lookback Dataset, CJDLD）为前瞻性数据集合，不接受针对单个病例报告的查询请求。