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2015 ; 21
(4
): 366-71
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Secured web-based video repository for multicenter studies
#MMPMID25630890
Yan L
; Hicks M
; Winslow K
; Comella C
; Ludlow C
; Jinnah HA
; Rosen AR
; Wright L
; Galpern WR
; Perlmutter JS
Parkinsonism Relat Disord
2015[Apr]; 21
(4
): 366-71
PMID25630890
show ga
BACKGROUND: We developed a novel secured web-based dystonia video repository for
the Dystonia Coalition, part of the Rare Disease Clinical Research network funded
by the Office of Rare Diseases Research and the National Institute of
Neurological Disorders and Stroke. A critical component of phenotypic data
collection for all projects of the Dystonia Coalition includes a standardized
video of each participant. We now describe our method for collecting, serving and
securing these videos that is widely applicable to other studies. METHODS: Each
recruiting site uploads standardized videos to a centralized secured server for
processing to permit website posting. The streaming technology used to view the
videos from the website does not allow downloading of video files. With
appropriate institutional review board approval and agreement with the hosting
institution, users can search and view selected videos on the website using
customizable, permissions-based access that maintains security yet facilitates
research and quality control. RESULTS: This approach provides a convenient
platform for researchers across institutions to evaluate and analyze shared video
data. We have applied this methodology for quality control, confirmation of
diagnoses, validation of rating scales, and implementation of new research
projects. CONCLUSIONS: We believe our system can be a model for similar projects
that require access to common video resources.
|*Dystonia
[MESH]
|Computer Security/*standards
[MESH]
|Databases, Factual/*standards
[MESH]
|Humans
[MESH]
|Internet/standards
[MESH]
|Multicenter Studies as Topic/methods/*standards
[MESH]