Supplementary Material for: Feasibility of Remote Assessment of Human Prion Diseases for Research and Surveillance
datasetposted on 12.03.2019 by Appleby B.S., Glisic K., Rhoads D.D., Bizzi A., Cohen M.L., Mahajan S.
Datasets usually provide raw data for analysis. This raw data often comes in spreadsheet form, but can be any collection of data, on which analysis can be performed.
Background: Prion disease research and surveillance can be challenging due to the disease’s difficulty to diagnose, rapid progression, and geographic dispersion. Improving accessibility through teleneurology could improve the ability to conduct these activities. Objectives: The aim of this study was to determine the feasibility of conducting teleneurology assessments for research and surveillance of prion diseases. Method: Participants were offered in-person visit, medical record review, or teleneurology assessment. Standardized histories and assessments evaluating cognition, functional ability, and neuropsychiatric symptoms were collected. Data regarding participants’ satisfaction with teleneurology were collected. Results: From April 2017 to July 2018, the study received 114 referrals. 45 and 5 participants consented for the teleneurology and medical record review arms of the study, respectively. 29 subjects participated in at least one teleneurology visit. Participants expressed satisfaction with teleneurology and found it easy to participate. Some aspects of the examination were hindered or interrupted due to technological reasons. Conclusions: We demonstrate the feasibility and preference of teleneurology as a modality in which subjects with prion disease can partake in clinical research. Technological aspects sometimes interfered with research assessments.