Applying World Wide Web technology to the study of patients with rare diseases.
Randomized, controlled trials of sporadic diseases are rarely conducted.
Recent developments in communication technology, particularly the World Wide Web, allow efficient dissemination and exchange of information.
However, software for the identification of patients with a rare disease and subsequent data entry and analysis in a secure Web database are currently not available.
To study cholangiocarcinoma, a rare cancer of the bile ducts, we developed a computerized disease tracing system coupled with a database accessible on the Web.
The tracing system scans computerized information systems on a daily basis and forwards demographic information on patients with bile duct abnormalities to an electronic mailbox.
If informed consent is given, the patient's demographic and preexisting medical information available in medical database servers are electronically forwarded to a UNIX research database.
Information from further patient-physician interactions and procedures is also entered into this database.
The database is equipped with a Web user interface that allows data entry from various platforms (PC-compatible, Macintosh, and UNIX workstations) anywhere inside or outside our institution.
To ensure patient confidentiality and data security, the database includes all security measures required for electronic medical records. (...)
Mots-clés Pascal : Maladie, Sporadique, Technologie, Réseau WWW, Système gestion base donnée, Randomisation, Etude multicentrique, Essai clinique, Application, Homme, Organisation santé, Internet
Mots-clés Pascal anglais : Disease, Sporadic, Technology, World wide web, Database management system, Randomization, Multicenter study, Clinical trial, Application, Human, Public health organization, Internet
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 98-0362372
Code Inist : 002B28A. Création : 25/01/1999.