The Development and Implementation of A Data Repository for Swallow Studies.

Abstract

The purpose of this clinical note is to (a) describe the development of an open-source data repository of videofluoroscopic evaluations of swallow studies (VFSS) from individuals across the lifespan with various feeding and swallowing disorders, and (b) to qualitatively assess the usefulness of a repository to engage students in research in swallowing disorders. This project was divided into two phases. Phase 1 focused on the development of the repository. This entailed identifying videos, removing private information, developing codes for swallow events and bolus variables, transcribing videos, and uploading them to a publicly available site for easy access. Phase 2 assessed the usefulness of the repository as a research tool. In this phase, a group of graduate and undergraduate students investigated a research question of interest to them. Each phase incorporated a qualitative analysis to examine the challenges encountered in that given phase. An open-source data repository of swallow studies, called DysphagiaBank, was successfully developed and uploaded into the TalkBank data repository. The database was easily employed by both graduate and undergraduates to engage in research in a timely fashion. Across qualitative analysis, the single consistent barrier to success was the COVID-19 pandemic that impacted access to campus and adequate internet for streaming. The use of an open-source data repository improved our students abilities to engage in research and enhanced their understanding of swallow physiology across the lifespan.