title: Creating a framework for data sharing in cochlear implant research.
abstract: OBJECTIVE
  To summarize the development process of a national database that was designed to facilitate communication and collaboration, improve care, and create a framework for aggregate data sharing in cochlear implant (CI) research.
  
  
  METHODS
  A group of nationally represented, multidisciplinary CI providers cooperated to define a standard set of data elements to incorporate into a database built by them in association with a group of computer scientists and software designers. CI centers across the USA, then, joined the non-profit Auditory Implant Initiative to use the database for their own clinical purposes and to help contribute to the national de-identified dataset for research and analytics.
  
  
  RESULTS
  Approximately 12 months after the full release of the database, clinical information on 373 patients has been entered from 17 different CI centers representing 61 hearing professionals. A blend of six academic, seven private, and four non-profit CI centers participated in this phase of the data sharing network.
  
  
  CONCLUSIONS
  The adoption of a single, standardized database by 17 centers throughout the USA has begun a framework for data sharing in CI research. Future steps include (1) expanding adoption, (2) scaling the database to include more patients, (3) streamlining the legal hurdles required for adoption, and (4) integrating the database with other software platforms (e.g. electronic health records, processors).
  
  
  CONCLUSIONS
  A standardized clinical outcomes database that is utilized by a growing network of CI centers can help strengthen research through aggregate data sharing.
authors.affiliation: a University of North Texas , 1155 Union Circle #305010, Denton , TX 76203 , USA.
authors.forename: Erin C
authors.initials: EC
authors.lastname: Schafer
authors.affiliation: b Head & Neck Surgical Associates , 1 Burnside Dr., Wichita Falls , TX 76310 , USA.
authors.forename: Jedidiah J
authors.initials: JJ
authors.lastname: Grisel
authors.affiliation: c Texas ENT & Allergy , 1730 Birmingham Dr., College Station , TX 77845 , USA.
authors.forename: Andrew
authors.initials: A
authors.lastname: de Jong
authors.affiliation: b Head & Neck Surgical Associates , 1 Burnside Dr., Wichita Falls , TX 76310 , USA.
authors.forename: Kimberly
authors.initials: K
authors.lastname: Ravelo
authors.affiliation: d Auditory Implant Initiative , 1 Burnside Dr., Wichita Falls , TX 76310 , USA.
authors.forename: Anne
authors.initials: A
authors.lastname: Lam
authors.affiliation: e University of Southern California Caruso Family Center for Childhood Communication , Keck Medicine of USC806 W. Adams Blvd., Los Angeles , CA 90007 , USA.
authors.forename: Meredith
authors.initials: M
authors.lastname: Burke
authors.affiliation: f Midwestern State University , 3410 Taft Blvd., Wichita Falls , TX 76308 , USA.
authors.forename: Terry
authors.initials: T
authors.lastname: Griffin
authors.affiliation: e University of Southern California Caruso Family Center for Childhood Communication , Keck Medicine of USC806 W. Adams Blvd., Los Angeles , CA 90007 , USA.
authors.forename: Margaret
authors.initials: M
authors.lastname: Winter
authors.affiliation: e University of Southern California Caruso Family Center for Childhood Communication , Keck Medicine of USC806 W. Adams Blvd., Los Angeles , CA 90007 , USA.
authors.forename: Debra
authors.initials: D
authors.lastname: Schrader
mesh_terms: D035843:Biomedical Research / Q000706:statistics & numerical data*; D019929:Cochlear Implantation / Q000706:statistics & numerical data*; D003054:Cochlear Implants; D003299:Cooperative Behavior; D016208:Databases, Factual; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D033183:Interdisciplinary Communication; D012984:Software; D012985:Software Design; D014481:United States
keywords: Analytics; Cochlear implant; Database; Registry; Research