Literature DB >> 12582784

A patient database application for Hereditary Deafness Epidemiology and Clinical Research (H.E.A.R.): an effort for standardization in multiple languages.

Markus Pfister1, Serdar Akyildiz, Ovunc Gunhan, Marcus Maassen, Jorge Jesus Rodriguez, Hans-Peter Zenner, Fazil Apaydin.   

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.

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Year:  2002        PMID: 12582784     DOI: 10.1007/s00405-002-0529-z

Source DB:  PubMed          Journal:  Eur Arch Otorhinolaryngol        ISSN: 0937-4477            Impact factor:   2.503


  2 in total

1.  Implementing Single Source: the STARBRITE proof-of-concept study.

Authors:  Rebecca Kush; Liora Alschuler; Roberto Ruggeri; Sally Cassells; Nitin Gupta; Landen Bain; Karen Claise; Monica Shah; Meredith Nahm
Journal:  J Am Med Inform Assoc       Date:  2007-06-28       Impact factor: 4.497

2.  [Mitochondrial A1555G mutation. Molecular genetic diagnosis in sporadic cases of non-syndromic hearing impairment].

Authors:  S Kupka; B Bodden-Kamps; M Baur; H P Zenner; M Pfister
Journal:  HNO       Date:  2004-11       Impact factor: 1.284

  2 in total

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