@article{93016f92220846ceb3ac16534a9687cd,
title = "Secured web-based video repository for multicenter studies",
abstract = "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.",
keywords = "Clinical trial, Dystonia, Secured access, Video protocol, Video repository",
author = "Ling Yan and Matt Hicks and Korey Winslow and Cynthia Comella and Christy Ludlow and Jinnah, {H. A.} and Rosen, {Ami R.} and Laura Wright and Galpern, {Wendy R.} and Perlmutter, {Joel S.}",
note = "Funding Information: This study received financial support from NIH grant NS065701 from the National Institute of Neurological Disorders and Stroke and the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences as well as NIH grants ( NS41509 , NS057105 , NS075321 , NS040470 ); the Murphy Fund ; American Parkinson Disease Association (APDA) Center for Advanced PD Research at Washington University; Greater St. Louis Chapter of the APDA; McDonnell Center for Higher Brain Function ; Barnes-Jewish Hospital Foundation ; Bachmann-Strauss Dystonia & Parkinson Foundation , Benign Essential Blepharospasm Research Foundation , and Tyler's Hope for a Cure . The Dystonia Coalition receives additional material or administrative support from industry sponsors (Allergan Inc., Ipsen Biopharm, Medtronics Inc, and Merz Pharmaceuticals) as well as private foundations (The American Dystonia Society, The Bachmann-Strauss Dystonia and Parkinson Foundation, BeatDystonia, The Benign Essential Blepharospasm Foundation, Dystonia Europe, Dystonia Ireland, The Dystonia Medical Research Foundation, The Dystonia Society, The Foundation for Dystonia Research, The National Spasmodic Dysphonia Association, and The National Spasmodic Torticollis Association). Publisher Copyright: {\textcopyright} 2015 Elsevier Ltd.",
year = "2015",
month = apr,
day = "1",
doi = "10.1016/j.parkreldis.2015.01.011",
language = "English",
volume = "21",
pages = "366--371",
journal = "Parkinsonism and Related Disorders",
issn = "1353-8020",
number = "4",
}