Secured web-based video repository for multicenter studies

• Published in: Parkinsonism & related disorders Vol. 21; no. 4; pp. 366 - 371
• Main Authors: Yan, Ling, Hicks, Matt, Winslow, Korey, Comella, Cynthia, Ludlow, Christy, Jinnah, H.A, Rosen, Ami R, Wright, Laura, Galpern, Wendy R, Perlmutter, Joel S
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 01.04.2015
• Subjects: Clinical trial; Computer Security - standards; Databases, Factual - standards; Dystonia; Humans; Internet - standards; Multicenter Studies as Topic - methods; Multicenter Studies as Topic - standards; Neurology; Secured access; Video protocol; Video Recording - standards; Video repository; file transfer protocol; SAN; secured socket layer/transport layer security; Burke Fahn Marsden rating scale; FTP; gigabytes; BFM; Health Insurance Portability and Acccountability Act; ASP.NET source file; institutional review board; PHI; WUSM; Office of Rare Disease Research; ORDR; HIPAA; Video repository; Clinical trial; secured file transfer protocol; Global Dystonia Rating Scale; Washington University School of Medicine; Secured access; computerized expression recognition toolbox; National Institute of Neurological Disorders and Stroke; random access memory; SFTP; SSH; ASPEX; TWSTRS; NINDS; storage area network; Video protocol; DVD; SSL/TLS; Toronto Western spasmodic Torticollis Rating Scale; secure shell; IRB; Dystonia; Gb; CERT; digital video disk; private health information; GDRS; RAM
• ISSN: 1353-8020; 1873-5126
• DOI: 10.1016/j.parkreldis.2015.01.011

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.