Journal
PARKINSONISM & RELATED DISORDERS
Volume 21, Issue 4, Pages 366-371Publisher
ELSEVIER SCI LTD
DOI: 10.1016/j.parkreldis.2015.01.011
Keywords
Video repository; Clinical trial; Secured access; Dystonia; Video protocol
Categories
Funding
- NIH from the National Institute of Neurological Disorders and Stroke [NS065701]
- Office of Rare Diseases Research at the National Center for Advancing Translational Sciences
- NIH [NS41509, NS057105, NS075321, NS040470]
- 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
- Tyler's Hope for a Cure
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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. (c) 2015 Elsevier Ltd. All rights reserved.
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