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Creating a framework for data sharing in cochlear implant research.

Erin C Schafer1, Jedidiah J Grisel2, Andrew de Jong3

  • 1a University of North Texas , 1155 Union Circle #305010, Denton , TX 76203 , USA.

Cochlear Implants International
|November 25, 2016
PubMed
Summary
This summary is machine-generated.

A new national database for cochlear implant (CI) research facilitates collaboration and data sharing among 17 US centers. This standardized clinical outcomes database strengthens research through aggregate data analysis.

Keywords:
AnalyticsCochlear implantDatabaseRegistryResearch

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Area of Science:

  • Audiology and Hearing Research
  • Biomedical Informatics
  • Health Services Research

Background:

  • Cochlear implant (CI) research requires robust data sharing for advancements.
  • Existing data fragmentation hinders collaborative research and clinical care improvement.
  • A standardized national database is essential for efficient CI research and analytics.

Purpose of the Study:

  • To develop a national database for cochlear implant (CI) research.
  • To facilitate communication, collaboration, and improved care for CI patients.
  • To establish a framework for aggregate, de-identified data sharing in CI research.

Main Methods:

  • Multidisciplinary CI providers collaborated with computer scientists to define database elements.
  • A non-profit initiative (Auditory Implant Initiative) was established to manage the database.
  • CI centers across the USA were invited to adopt the database for clinical use and data contribution.

Main Results:

  • Clinical data from 373 patients were entered within 12 months of database release.
  • 17 CI centers, including academic, private, and non-profit, participated.
  • 61 hearing professionals contributed data, representing a growing network.

Conclusions:

  • Standardized database adoption by multiple centers establishes a framework for CI research data sharing.
  • Future work includes expanding adoption, increasing patient data, and integrating with other health platforms.
  • A growing network utilizing a standardized database enhances CI research through aggregate data sharing.