Feasibility of Virtual Research Visits in Fox Trial Finder
Feasibility of Virtual Research Visits in Fox Trial Finder
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DOI：
10.3233/jpd-150549
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发表时间：
2015-01-01
影响因子：
5.2
通讯作者：
Biglan, Kevin M.
中科院分区：
文献类型：
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作者：
Dorsey, E. Ray;Wagner, Joseph D.;Biglan, Kevin M.
背景：Fox Trial是一个在线注册中心，针对有兴趣参与帕金森病（PD）研究的帕金森病（PD）患者和非PD患者。然而，距离或残疾可能会阻止这些人参与传统的，以临床为基础的研究在主要centers.Objective目的：使用视频会议连接参与者与专家：（1）证明虚拟研究访问的可行性在这个人群中（2）收集参与者的表型数据，（3）验证自我报告的诊断，（4）衡量对虚拟研究访问的兴趣。我们通过福克斯审判网在美国各地征集志愿者。有兴趣的个人与PD提供同意，如果需要，提供网络摄像头，完成基线调查，并远程下载视频会议软件。参与者进行了测试连接和评估预约，其中包括蒙特利尔认知评估（莫卡），然后与神经科医生进行虚拟研究访问，该神经科医生回顾了他们的病史，并使用修改后的运动障碍协会统一帕金森病评定量表评估了他们的PD。神经科医生评估PD诊断和神经病学。医生和参与者进行了调查，他们的experience.Results：204个人谁同意，166（81%）个人从39个州完成了所有访问。平均年龄为62岁，平均病程为8.0年。平均莫卡评分为26.5分，平均改良MDS-MRS运动评分为22.8分（共124分）。神经科医生在97%的病例中将PD判断为最可能的诊断。总体满意度的访问是79%（满意或非常满意）之间的神经学家和93%之间的participator.Conclusions：通过虚拟研究访问，神经学家从事，特点，并验证自我报告的诊断PD个人在一个广泛的地理。这种模式可以促进未来的研究参与。
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.