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Feasibility of Virtual Research Visits in Fox Trial Finder

Background: Fox Trial Finder is an online registry for individuals with and without Parkinson disease (PD) interested in participating in PD research. However, distance or disability could prevent such individuals from participating in traditional, clinic-based research at major centers. Objective:...

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Autores principales: Dorsey, E. Ray, Wagner, Joseph D., Bull, Michael T., Rizzieri, Ashley, Grischkan, Justin, Achey, Meredith A., Sherer, Todd, Chowdhury, Sohini, Meunier, Claire, Cappelletti, Lily, Rocker, Charlotte, Richard, Irene H., Schwarz, Heidi, Kang, Gail, Ahmad, Stacy H., Biemiller, Rachel A., Biglan, Kevin M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: IOS Press 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4923707/
https://www.ncbi.nlm.nih.gov/pubmed/26406130
http://dx.doi.org/10.3233/JPD-150549
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author Dorsey, E. Ray
Wagner, Joseph D.
Bull, Michael T.
Rizzieri, Ashley
Grischkan, Justin
Achey, Meredith A.
Sherer, Todd
Chowdhury, Sohini
Meunier, Claire
Cappelletti, Lily
Rocker, Charlotte
Richard, Irene H.
Schwarz, Heidi
Kang, Gail
Ahmad, Stacy H.
Biemiller, Rachel A.
Biglan, Kevin M.
author_facet Dorsey, E. Ray
Wagner, Joseph D.
Bull, Michael T.
Rizzieri, Ashley
Grischkan, Justin
Achey, Meredith A.
Sherer, Todd
Chowdhury, Sohini
Meunier, Claire
Cappelletti, Lily
Rocker, Charlotte
Richard, Irene H.
Schwarz, Heidi
Kang, Gail
Ahmad, Stacy H.
Biemiller, Rachel A.
Biglan, Kevin M.
author_sort Dorsey, E. Ray
collection PubMed
description Background: Fox Trial Finder is an online registry for individuals with and without Parkinson disease (PD) interested in participating in PD research. However, distance or disability could prevent such individuals from participating in traditional, clinic-based research at major centers. Objective: Use videoconferencing to connect participants to specialists to: (1) demonstrate feasibility of virtual research visits within this population (2) collect phenotypic data of the participants, (3) validate self-reported diagnosis, and (4) gauge interest in virtual research visits. Methods: We solicited volunteers throughout the United States through Fox Trial Finder. Interested individuals with PD provided consent, were given web cameras if needed, completed baseline surveys, and downloaded videoconferencing software remotely. Participants had a test connection and assessment appointment which included the Montreal Cognitive Assessment (MoCA), then a virtual research visit with a neurologist who reviewed their history and assessed their PD using a modified Movement Disorders Society Unified Parkinson’s Disease Rating Scale. Neurologists assessed PD diagnosis and symptomatology. Physicians and participants were surveyed about their experience. Results: Of 204 individuals who consented, 166 (81% ) individuals from 39 states completed all visits. The mean age was 62 and mean disease duration was 8.0 years. Mean MoCA score was 26.5, and mean modified MDS-UPDRS motor score was 22.8 (out of a possible 124). Neurologists judged PD as the most likely diagnosis in 97% of cases. Overall satisfaction with the visits was 79% (satisfied or very satisfied) among neurologists and 93% among participants. Conclusions: Through virtual research visits, neurologists engaged, characterized, and validated self-reported diagnosis in individuals with PD over a broad geography. This model may facilitate future research participation.
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spelling pubmed-49237072016-06-29 Feasibility of Virtual Research Visits in Fox Trial Finder Dorsey, E. Ray Wagner, Joseph D. Bull, Michael T. Rizzieri, Ashley Grischkan, Justin Achey, Meredith A. Sherer, Todd Chowdhury, Sohini Meunier, Claire Cappelletti, Lily Rocker, Charlotte Richard, Irene H. Schwarz, Heidi Kang, Gail Ahmad, Stacy H. Biemiller, Rachel A. Biglan, Kevin M. J Parkinsons Dis Research Article Background: Fox Trial Finder is an online registry for individuals with and without Parkinson disease (PD) interested in participating in PD research. However, distance or disability could prevent such individuals from participating in traditional, clinic-based research at major centers. Objective: Use videoconferencing to connect participants to specialists to: (1) demonstrate feasibility of virtual research visits within this population (2) collect phenotypic data of the participants, (3) validate self-reported diagnosis, and (4) gauge interest in virtual research visits. Methods: We solicited volunteers throughout the United States through Fox Trial Finder. Interested individuals with PD provided consent, were given web cameras if needed, completed baseline surveys, and downloaded videoconferencing software remotely. Participants had a test connection and assessment appointment which included the Montreal Cognitive Assessment (MoCA), then a virtual research visit with a neurologist who reviewed their history and assessed their PD using a modified Movement Disorders Society Unified Parkinson’s Disease Rating Scale. Neurologists assessed PD diagnosis and symptomatology. Physicians and participants were surveyed about their experience. Results: Of 204 individuals who consented, 166 (81% ) individuals from 39 states completed all visits. The mean age was 62 and mean disease duration was 8.0 years. Mean MoCA score was 26.5, and mean modified MDS-UPDRS motor score was 22.8 (out of a possible 124). Neurologists judged PD as the most likely diagnosis in 97% of cases. Overall satisfaction with the visits was 79% (satisfied or very satisfied) among neurologists and 93% among participants. Conclusions: Through virtual research visits, neurologists engaged, characterized, and validated self-reported diagnosis in individuals with PD over a broad geography. This model may facilitate future research participation. IOS Press 2015-09-14 /pmc/articles/PMC4923707/ /pubmed/26406130 http://dx.doi.org/10.3233/JPD-150549 Text en IOS Press and the authors. All rights reserved https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Dorsey, E. Ray
Wagner, Joseph D.
Bull, Michael T.
Rizzieri, Ashley
Grischkan, Justin
Achey, Meredith A.
Sherer, Todd
Chowdhury, Sohini
Meunier, Claire
Cappelletti, Lily
Rocker, Charlotte
Richard, Irene H.
Schwarz, Heidi
Kang, Gail
Ahmad, Stacy H.
Biemiller, Rachel A.
Biglan, Kevin M.
Feasibility of Virtual Research Visits in Fox Trial Finder
title Feasibility of Virtual Research Visits in Fox Trial Finder
title_full Feasibility of Virtual Research Visits in Fox Trial Finder
title_fullStr Feasibility of Virtual Research Visits in Fox Trial Finder
title_full_unstemmed Feasibility of Virtual Research Visits in Fox Trial Finder
title_short Feasibility of Virtual Research Visits in Fox Trial Finder
title_sort feasibility of virtual research visits in fox trial finder
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4923707/
https://www.ncbi.nlm.nih.gov/pubmed/26406130
http://dx.doi.org/10.3233/JPD-150549
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