Secured web-based video repository for multicenter studies

Ling Yan; Matt Hicks; Korey Winslow; Cynthia Comella; Christy Ludlow; H A Jinnah; Ami R Rosen; Laura Wright; Wendy R Galpern; Joel S Perlmutter

doi:10.1016/j.parkreldis.2015.01.011

Secured web-based video repository for multicenter studies

Parkinsonism Relat Disord. 2015 Apr;21(4):366-71. doi: 10.1016/j.parkreldis.2015.01.011. Epub 2015 Jan 20.

Authors

Ling Yan¹, Matt Hicks², Korey Winslow³, Cynthia Comella⁴, Christy Ludlow⁵, H A Jinnah⁶, Ami R Rosen⁷, Laura Wright⁸, Wendy R Galpern⁹, Joel S Perlmutter¹⁰

Affiliations

¹ Neurology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: yali@ohsu.edu.
² Radiology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: matt@npg.wustl.edu.
³ Radiology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: koreywinslow@gmail.com.
⁴ Neurology at Rush Medical School, Chicago, IL, USA. Electronic address: cynthia_comella@rush.edu.
⁵ Department of Communication Sciences and Disorders, James Madison University, USA. Electronic address: ludlowcx@jmu.edu.
⁶ Neurology, Emory University, Atlanta, GA, USA. Electronic address: hjinnah@emory.edu.
⁷ Neurology, Emory University, Atlanta, GA, USA. Electronic address: arosen3@emory.edu.
⁸ Neurology, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: wrightl@npg.wustl.edu.
⁹ National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USA. Electronic address: galpernw@ninds.nih.gov.
¹⁰ 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.

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.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Computer Security / standards*
Databases, Factual / standards*
Dystonia*
Humans
Internet / standards
Multicenter Studies as Topic / methods
Multicenter Studies as Topic / standards*
Video Recording / standards*

Abstract

Publication types

MeSH terms

Grants and funding