A New Resource for Aphasia Research: The Western Pennsylvania Patient Registry (WPPR) and the Remote Acquisition of Neuropsychological Data (RAND) System

• ¹ University of Pittsburgh, Department of Psychology, United States
• ² University of Pittsburgh, Learning Research and Development Center, United States
• ³ VA Pittsburgh Healthcare System, Geriatric Research, Education, and Clinical Center, United States
• ⁴ University of Pittsburgh, Department of Communication Science and Disorders, United States
• ⁵ University of Pittsburgh, Department of Rehabilitation Science and Technology, United States
• ⁶ University of Pittsburgh, Center for the Neural Basis of Cognition, United States

The Western Pennsylvania Patient Registry (WPPR) is a de-identified clinical registry of stroke survivors who have expressed an interest in participating in research (Balason et al., 2010). Since its inception, more than 2300 individuals have been enrolled in WPPR, more than 300 with aphasia. WPPR was founded as a resource for clinical investigations, specifically human neuropsychological research, and it has been a valuable tool to recruit and test participants with aphasia in the western Pennsylvania region. However, its use by geographically distant investigators has been limited, because standard neuropsychological methods rely upon face-to-face interactions between a participant and researcher. In response, we have designed and tested a stable but flexible and integrated system for the remote acquisition of neuropsychological data (RAND) (Durisko et al., 2016). This system, which uses off-the-shelf technology, extends the geographic reach of WPPR. The basic architecture of the RAND system consists of a secure commercial cloud-based server and two Internet-enabled computing devices (one for the researcher and one for the participant). A variety of computing devices can be used (e.g., desktops, laptops, and mobile devices with Macintosh, Windows, or iOS operating software). Shared audiovisual feeds can provide continuous virtual interaction between a participant and researcher, shared presentation and computing controls can be used to deliver auditory and visual test items adapted from standard face-to-face materials or execute computer-based assessments, and spoken and manual responses can be acquired. Stroke survivors (N=50) with varied language, cognitive, and motor issues were recruited from WPPR to participate in RAND testing sessions where we administered a set of standard neuropsychological tests, including Web-based assessments. All of the stroke survivors participated in two sessions: 1) a face-to-face session in the lab and 2) either a face-to face session at home or a virtual session using an iPad or Windows tablet. We observed moderate-to-high reliability on neuropsychological tests across the two testing sessions, with similar results for repeated face-to-face as compared to face-to-face and virtual sessions. Notably, the participants in the virtual sessions were able to use the RAND system even in those cases where it occurred prior to any face-to-face contact, and participants indicated a high level of satisfaction with the system. Thus, our RAND system offers a readily available and promising alternative to face-to-face neuropsychological assessment in stroke research. WPPR’s database tools and data management strategies, along with its dedicated clinical and research staff, are available for clinicians and researchers worldwide. The development of the RAND system allows WPPR to become a global recruitment resource for clinicians and researchers of stroke and aphasia.