Patient registries in cognitive neuroscience research: Advantages, challenges, and practical advice
Patient registries in cognitive neuroscience research: Advantages, challenges, and practical advice
复制标题
DOI：
10.1162/jocn.2008.20065
复制
发表时间：
2008-06-01
影响因子：
3.2
通讯作者：
Chatterjee, Anjan
中科院分区：
文献类型：
--
作者：
Fellows, Lesley K.;Stark, Marianna;Chatterjee, Anjan
神经心理学工作是认知神经科学的历史基础，并继续成为研究人类行为的神经基础的重要方法，补充了研究人类受试者大脑结构-功能关系的新技术。神经影像学、统计学和信息管理的最新进展为神经心理学研究提供了强有力的工具。与此同时，不断变化的道德要求和隐私问题对招募研究参与者的程序以及随后的数据管理提出了越来越高的标准。共享的、集中管理的研究登记处提供了一个框架，以促进非临床医生使用这种方法，解决伦理问题，简化招募和筛选程序，并协调后续的研究联系和数据存储。我们报告了两个这样的登记处的经验：宾夕法尼亚大学认知神经科学中心的患者数据库和麦吉尔大学的认知神经科学研究登记处。
Neuropsychological work is the historical foundation of cognitive neuroscience and continues to be an important method in the study of the neural basis of human behavior, complementing newer techniques for investigating brain structure-function relationships in human subjects. Recent advances in neuroimaging, statistics and information management provide powerful tools to support neuropsychoiogical research. At the same time, changing ethical requirements and privacy concerns impose increasingly high standards on the procedures used to recruit research participants, and on subsequent data management. Shared, centrally managed research registries provide a framework for facilitating access to this method for nonclinicians, addressing ethical concerns, streamlining recruitment and screening procedures, and coordinating subsequent research contacts and data storage. We report the experience of two such registries: the patient database of the Center for Cognitive Neuroscience at the University of Pennsylvania, and the Cognitive Neuroscience Research Registry at McGill University.