Creating a framework for data sharing in cochlear implant research

Objectives: 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 n...