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.
authors: Neurology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: yali@ohsu.edu.
authors: Ling
authors: L
authors: Yan
authors: Radiology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: matt@npg.wustl.edu.
authors: Matt
authors: M
authors: Hicks
authors: Radiology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: koreywinslow@gmail.com.
authors: Korey
authors: K
authors: Winslow
authors: Neurology at Rush Medical School, Chicago, IL, USA. Electronic address: cynthia_comella@rush.edu.
authors: Cynthia
authors: C
authors: Comella
authors: Department of Communication Sciences and Disorders, James Madison University, USA. Electronic address: ludlowcx@jmu.edu.
authors: Christy
authors: C
authors: Ludlow
authors: Neurology, Emory University, Atlanta, GA, USA. Electronic address: hjinnah@emory.edu.
authors: H A
authors: HA
authors: Jinnah
authors: Neurology, Emory University, Atlanta, GA, USA. Electronic address: arosen3@emory.edu.
authors: Ami R
authors: AR
authors: Rosen
authors: Neurology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: wrightl@npg.wustl.edu.
authors: Laura
authors: L
authors: Wright
authors: National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USA. Electronic address: galpernw@ninds.nih.gov.
authors: Wendy R
authors: WR
authors: Galpern
authors: Neurology, Washington University School of Medicine, St. Louis, MO, USA; Radiology, Washington University School of Medicine, St. Louis, MO, USA; Anatomy and Neurobiology, Physical Therapy, Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: joel@npg.wustl.edu.
authors: Joel S
authors: JS
authors: Perlmutter
mesh_terms: D016494:Computer Security / Q000592:standards*; D016208:Databases, Factual / Q000592:standards*; D004421:Dystonia; D006801:Humans; D020407:Internet / Q000592:standards; D015337:Multicenter Studies as Topic / Q000379:methods / Q000592:standards*; D014741:Video Recording / Q000592:standards*
keywords: Clinical trial; Dystonia; Secured access; Video protocol; Video repository
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