Patient registries in cognitive neuroscience research: advantages, challenges, and practical advice

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 neuropsychological 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.