title: A patient database application for Hereditary Deafness Epidemiology and Clinical Research (H.E.A.R.): an effort for standardization in multiple languages.
abstract: One of the most challenging and neglected issues in medicine is the effective recording of the data obtained from the patients. The "European Work Group on the Genetics of Hearing Impairment," which has been working since 1996, proposed a few questionnaires to collect data regarding the phenotype, ENT findings, audiological examination findings and other special investigations. In this study, a computerized patient database application named "Izmir H.E.A.R version 1.0," written in Delphi 4.0 for Windows for recording the patients with hearing problems, is presented. The application consists of a modular form, including information about identity, genetic condition, proband query, audiology and vestibular tests, phenotype, pedigree and special examinations, which allows data entry on all these issues. It has been developed by using the guidelines of Hereditary Deafness Epidemiology and Clinical Research (H.E.A.R.) and by the experience gained within the last 10 years by the authors. The target population of the program is the ENT clinicians, audiologists, epidemiologists, geneticists and researchers in the field. The main idea is to create a program serving the needs of both the daily routine work and research purposes and to distribute this program to the above-mentioned specialists, to encourage them to try the first version and to find a standard and/or better way to collect data. For this reason, the program aims to be multilingual, and the currently available languages are English, German, Spanish and Turkish.
authors.affiliation: Tübingen University, School of Medicine, Department of Otolaryngology, Germany, mpfister@hgmp.mrc.ac.uk
authors.forename: Markus
authors.initials: M
authors.lastname: Pfister
authors.forename: Serdar
authors.initials: S
authors.lastname: Akyildiz
authors.forename: Ovunc
authors.initials: O
authors.lastname: Gunhan
authors.forename: Marcus
authors.initials: M
authors.lastname: Maassen
authors.forename: Jorge Jesus
authors.initials: JJ
authors.lastname: Rodriguez
authors.forename: Hans-Peter
authors.initials: HP
authors.lastname: Zenner
authors.forename: Fazil
authors.initials: F
authors.lastname: Apaydin
mesh_terms: D035843:Biomedical Research; D003144:Communication Barriers; D003625:Data Collection; D003628:Database Management Systems / Q000458:organization & administration*; D003638:Deafness / Q000453:epidemiology* / Q000235:genetics*; D005260:Female; D006801:Humans; D007256:Information Systems; D008297:Male; D016347:Medical Records Systems, Computerized / Q000458:organization & administration*; D009323:Natural Language Processing; D016730:Program Development; D012015:Reference Standards; D014177:Translations; D014421:Turkey