المؤلفون: Pfister M; Tübingen University, School of Medicine, Department of Otolaryngology, Germany, mpfister@hgmp.mrc.ac.uk, Akyildiz S, Gunhan O, Maassen M, Rodriguez JJ, Zenner HP, Apaydin F

المصدر: European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery [Eur Arch Otorhinolaryngol] 2003 Feb; Vol. 260 (2), pp. 81-5. Date of Electronic Publication: 2002 Sep 27.

نوع المنشور: Journal Article

بيانات الدورية: Publisher: Springer International Country of Publication: Germany NLM ID: 9002937 Publication Model: Print-Electronic Cited Medium: Print ISSN: 0937-4477 (Print) Linking ISSN: 09374477 NLM ISO Abbreviation: Eur Arch Otorhinolaryngol Subsets: MEDLINE

مواضيع طبية MeSH: Natural Language Processing*, Database Management Systems/*organization & administration , Deafness/*epidemiology , Deafness/*genetics , Medical Records Systems, Computerized/*organization & administration, Biomedical Research ; Communication Barriers ; Data Collection ; Female ; Humans ; Information Systems ; Male ; Program Development ; Reference Standards ; Translations ; Turkey

مستخلص: 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.