title: [Data protection for the national German Central Registry of Pediatric Hearing Disorders].
abstract: The German Registry for Hearing Loss in Children (DZH) processes nationwide data from audiological centers. Coping with the accrued data and its subsequent management and analysis requires a high degree of security and control. To establish a nationwide registry it is necessary at an early stage to take into consideration the legal requirements of the participating states. Use of the DZH as an example demonstrates how a pragmatic solution can be reached. Special issues concerning data collection, transfer, storage and deletion, coding strategies to ensure anonymity, checking for duplicate entries, data separation, and automated data analysis and data protection are explained.
authors.affiliation: Abteilung für Audiologie und Phoniatrie, Universitätsklinikum Benjamin Franklin, Freie Universität Berlin, Bonn.
authors.forename: U
authors.initials: U
authors.lastname: Finckh-Krämer
authors.forename: M
authors.initials: M
authors.lastname: Hess
authors.forename: M
authors.initials: M
authors.lastname: Gross
authors.forename: A
authors.initials: A
authors.lastname: Wienke
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D016494:Computer Security / Q000331:legislation & jurisprudence*; D003625:Data Collection / Q000331:legislation & jurisprudence; D005260:Female; D005858:Germany / Q000453:epidemiology; D006311:Hearing Disorders / Q000453:epidemiology* / Q000209:etiology; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D016347:Medical Records Systems, Computerized / Q000331:legislation & jurisprudence*; D010348:Patient Care Team; D012042:Registries / Q000706:statistics & numerical data*
vernacular_title: Datenschutz innerhalb des länderübergreifenden Deutschen Zentralregisters für kindliche Hörstörungen.