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The Development and Implementation of A Data Repository for Swallow Studies

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Abstract

Purpose

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.

Method

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.

Results

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.

Conclusion

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.

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Acknowledgements

The authors are thankful for the support from TIMS Medical which made this project possible. They also wish to acknowledge all the students in the UNM Swallow Disorders Lab who helped with development and engagement phases of this project, especially the efforts of Marie Ray, Leslie Ibuado, Olivia Zamorano-Pedregon, Samantha Morowski, Megan Friedman, and Mahshid Rashidi.

A subset of these data were presented at the New Mexico Speech and Hearing Convention in October 2022 and at the Dysphagia Research Society Annual Meeting in March 2023.

Funding

This study was partially funded by the Arts & Sciences Support for Undergraduate Research Experience (ASSURE) fellowship, funded by the University of New Mexico College of Arts and Sciences.

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Authors and Affiliations

  1. University of New Mexico, Albuquerque, NM, MSC01 1195, 87131-0001, USA

    Phyllis M. Palmer

  2. Presbyterian Healthcare Services Albuquerque, Albuquerque, NM, USA

    Aaron H. Padilla

  3. Carnegie Mellon University, Pittsburgh, PA, USA

    Brian MacWhinney

Authors
  1. Phyllis M. Palmer
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  2. Aaron H. Padilla
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  3. Brian MacWhinney
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Corresponding author

Correspondence to Phyllis M. Palmer.

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Conflict of Interest

Author A declares that she has no conflicts. Author B declared that he has no conflicts. Author C is one of the original developers of the TalkBank repository. He did not receive any funding to support the addition of the swallow database into the TalkBank repository.

Ethical approval

No animals were used in this study.

Human data involved retrospective data that was collected for clinical purposes. All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was waived.

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Palmer, P.M., Padilla, A.H. & MacWhinney, B. The Development and Implementation of A Data Repository for Swallow Studies. Dysphagia (2023). https://doi.org/10.1007/s00455-023-10632-8

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