PT - JOURNAL ARTICLE AU - Bove, Riley AU - Poole, Shane AU - Cuneo, Richard AU - Gupta, Sasha AU - Sabatino, Joseph AU - Harms, Meagan AU - Cooper, Tifffany AU - Rowles, William AU - Miller, Nicolette AU - Gomez, Refujia AU - Lincoln, Robin AU - McPolin, Kira AU - Powers, Kyra AU - Santaniello, Adam AU - Renschen, Adam AU - Bevan, Carolyn J. AU - Gelfand, Jeffrey M. AU - Goodin, Douglas S. AU - Guo, Chu-Yueh AU - Romeo, Andrew R. AU - Hauser, Stephen L. AU - Campbell Cree, Bruce Anthony TI - Remote Observational Research for Multiple Sclerosis AID - 10.1212/NXI.0000000000200070 DP - 2023 Mar 01 TA - Neurology - Neuroimmunology Neuroinflammation PG - e200070 VI - 10 IP - 2 4099 - http://nn.neurology.org/content/10/2/e200070.short 4100 - http://nn.neurology.org/content/10/2/e200070.full SO - Neurol Neuroimmunol Neuroinflamm2023 Mar 01; 10 AB - Background and Objectives Prospective, deeply phenotyped research cohorts monitoring individuals with chronic neurologic conditions, such as multiple sclerosis (MS), depend on continued participant engagement. The COVID-19 pandemic restricted in-clinic research activities, threatening this longitudinal engagement, but also forced adoption of televideo-enabled care. This offered a natural experiment in which to analyze key dimensions of remote research: (1) comparison of remote vs in-clinic visit costs from multiple perspectives and (2) comparison of the remote with in-clinic measures in cross-sectional and longitudinal disability evaluations.Methods Between March 2020 and December 2021, 207 MS cohort participants underwent hybrid in-clinic and virtual research visits; 96 contributed 100 “matched visits,” that is, in-clinic (Neurostatus-Expanded Disability Status Scale [NS-EDSS]) and remote (televideo-enabled EDSS [tele-EDSS]; electronic patient-reported EDSS [ePR-EDSS]) evaluations. Clinical, demographic, and socioeconomic characteristics of participants were collected.Results The costs of remote visits were lower than in-clinic visits for research investigators (facilities, personnel, parking, participant compensation) but also for participants (travel, caregiver time) and carbon footprint (p < 0.05 for each). Median cohort EDSS was similar between the 3 modalities (NS-EDSS: 2, tele-EDSS: 1.5, ePR-EDSS: 2, range 0.6.5); the remote evaluations were each noninferior to the NS-EDSS within ±0.5 EDSS point (TOST for noninferiority, p < 0.01 for each). Furthermore, year to year, the % of participants with worsening/stable/improved EDSS scores was similar, whether each annual evaluation used NS-EDSS or whether it switched from NS-EDSS to tele-EDSS.Discussion Altogether, the current findings suggest that remote evaluations can reduce the costs of research participation for patients, while providing a reasonable evaluation of disability trajectory longitudinally. This could inform the design of remote research that is more inclusive of diverse participants.DMT=disease-modifying treatment; EDSS=Expanded Disability Status Scale; EPIC=Expression/genomics, Proteomics, Imaging, and Clinical; ePR-EDSS=electronic patient-reported EDSS; MS=multiple sclerosis; NS-EDSS=Neurostatus EDSS; tele-EDSS=televideo-enabled Expanded Disability Status Scale