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March 2023; 10 (2) Research ArticleOpen Access

Remote Observational Research for Multiple Sclerosis

A Natural Experiment

Riley Bove, Shane Poole, Richard Cuneo, Sasha Gupta, Joseph Sabatino, Meagan Harms, Tifffany Cooper, William Rowles, Nicolette Miller, Refujia Gomez, Robin Lincoln, Kira McPolin, Kyra Powers, Adam Santaniello, Adam Renschen, Carolyn J. Bevan, Jeffrey M. Gelfand, Douglas S. Goodin, Chu-Yueh Guo, Andrew R. Romeo, Stephen L. Hauser, Bruce Anthony Campbell Cree; on behalf of the UCSF MS-EPIC Team
First published December 30, 2022, DOI: https://doi.org/10.1212/NXI.0000000000200070
Riley Bove
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Shane Poole
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Richard Cuneo
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Sasha Gupta
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Joseph Sabatino Jr
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Meagan Harms
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Tifffany Cooper
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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William Rowles
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Nicolette Miller
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Refujia Gomez
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Robin Lincoln
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Kira McPolin
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Kyra Powers
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Adam Santaniello
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Adam Renschen
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Carolyn J. Bevan
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Jeffrey M. Gelfand
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Douglas S. Goodin
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Chu-Yueh Guo
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Andrew R. Romeo
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Stephen L. Hauser
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Bruce Anthony Campbell Cree
From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
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Full PDF
Citation
Remote Observational Research for Multiple Sclerosis
A Natural Experiment
Riley Bove, Shane Poole, Richard Cuneo, Sasha Gupta, Joseph Sabatino, Meagan Harms, Tifffany Cooper, William Rowles, Nicolette Miller, Refujia Gomez, Robin Lincoln, Kira McPolin, Kyra Powers, Adam Santaniello, Adam Renschen, Carolyn J. Bevan, Jeffrey M. Gelfand, Douglas S. Goodin, Chu-Yueh Guo, Andrew R. Romeo, Stephen L. Hauser, Bruce Anthony Campbell Cree
Neurol Neuroimmunol Neuroinflamm Mar 2023, 10 (2) e200070; DOI: 10.1212/NXI.0000000000200070

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    Figure 1 Selected Sociodemographic Characteristics of the 207 Participants Seen Remotely During the Study Period

    (A) One-way driving distance between the participant's zip code and the clinic. (B) Median household income in participants' zip code, according to 2021 California Housing and Community Development. (C) Distribution of demographic characteristics.

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    Figure 2 Overlay of California Resident Study Participants' Residence and COVID-19 Infection Rates in Their Communities (Infections per 100,000 People Ever, as of December 2021)

    Panel A represents a map of all (n = 174) participants who were California residents. Panel B represents participants from the San Francisco Bay Area (n = 120). The purple circles represent individual participants in a given area code (larger circles = more participants). The hue of the areas corresponding to participants' zip codes represents the cumulative COVID-19 cases as of December 2021 in that specific zip code.

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    Figure 3 Mean and Median Values for All 3 Disability Evaluation Modalities (Neurostatus, ePR-EDSS and Tele-EDSS) Obtained From 100 Visits (96 Participants) With Multiple Sclerosis

    Panel A describes the summary statistics, and Panel B visualizes these in a box plot. tele-EDSS = televideo-enabled Expanded Disability Status Scale.

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    Figure 4 Correlation Between Disability Scores Across the 3 Examination Modalities

    As the disability level increases, the correlation becomes higher. tele-EDSS = televideo-enabled Expanded Disability Status Scale.

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    Figure 5 Distribution of Changes in Participants' Scores Between Annual Visits

    Panel A represents annual changes in NS-EDSS for all visits from these participants, 2004–2018, and Panel B between 2019-2022. Panel C represents annual changes during the 2019–2022 epoch when switching from NS-EDSS at 1 time point to tele-EDSS at the next annual evaluation. Panel D represents annual changes during the 2019–2022 epoch when switching from NS-EDSS at 1 time point to ePR-EDSS at the next annual evaluation. For each comparison, the bar chart depicts absolute change and the pie chart represents the % of participants with EDSS stability, worsening or improvement between the annual visits as defined above, and using the 1-year NS-NS EDSS change from participants during the 2004–2018 timeframe as reference. Statistical equivalence was valid for 1-year NS-NS, NS-tele, and NS-PR 2018–2022 (p = 0.000006, 0.000017, 0.0196, respectively). ePR-EDSS = electronic patient-reported EDSS.

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