Perspective on the Development of a Large-Scale Clinical Data Repository for Pediatric Hearing Research.

TitlePerspective on the Development of a Large-Scale Clinical Data Repository for Pediatric Hearing Research.
Publication TypeJournal Article
Year of Publication2020
AuthorsPennington JW, Ruth B, Miller JM, Peterson J, Xu B, Masino AJ, Krantz I, Manganella J, Gomes T, Stiles D, Kenna M, Hood LJ, Germiller J, E Crenshaw B
JournalEar Hear
Volume41
Issue2
Pagination231-238
Date Published2020 Mar/Apr
ISSN1538-4667
KeywordsAudiology, Child, Cohort Studies, Databases, Factual, Hearing, Humans
Abstract

The use of "big data" for pediatric hearing research requires new approaches to both data collection and research methods. The widespread deployment of electronic health record systems creates new opportunities and corresponding challenges in the secondary use of large volumes of audiological and medical data. Opportunities include cost-effective hypothesis generation, rapid cohort expansion for rare conditions, and observational studies based on sample sizes in the thousands to tens of thousands. Challenges include finding and forming appropriately skilled teams, access to data, data quality assessment, and engagement with a research community new to big data. The authors share their experience and perspective on the work required to build and validate a pediatric hearing research database that integrates clinical data for over 185,000 patients from the electronic health record systems of three major academic medical centers.

DOI10.1097/AUD.0000000000000779
Alternate JournalEar Hear
PubMed ID31408044
PubMed Central IDPMC7007829
Grant ListR24 DC012207 / DC / NIDCD NIH HHS / United States