Applying World Wide Web technology to the study of patients with rare diseases

Piet C. De Groen, Jon A. Barry, William J. Schaller

Research output: Contribution to journalArticle

22 Citations (Scopus)

Abstract

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 and analysis in a secure data entry 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. The combination of a Web-based disease tracing system and a database has broad applications, particularly for the integration of clinical research within clinical practice and for the coordination of multicenter trials.

Original languageEnglish (US)
Pages (from-to)107-113
Number of pages7
JournalAnnals of Internal Medicine
Volume129
Issue number2
StatePublished - Jul 15 1998

Fingerprint

Rare Diseases
Internet
Databases
Technology
Demography
Security Measures
Bile Duct Neoplasms
Computer Security
Cholangiocarcinoma
Information Dissemination
Electronic Health Records
Confidentiality
Bile Ducts
Informed Consent
Research
Information Systems
Multicenter Studies
Software
Randomized Controlled Trials
Communication

ASJC Scopus subject areas

  • Medicine(all)

Cite this

De Groen, P. C., Barry, J. A., & Schaller, W. J. (1998). Applying World Wide Web technology to the study of patients with rare diseases. Annals of Internal Medicine, 129(2), 107-113.

Applying World Wide Web technology to the study of patients with rare diseases. / De Groen, Piet C.; Barry, Jon A.; Schaller, William J.

In: Annals of Internal Medicine, Vol. 129, No. 2, 15.07.1998, p. 107-113.

Research output: Contribution to journalArticle

De Groen, PC, Barry, JA & Schaller, WJ 1998, 'Applying World Wide Web technology to the study of patients with rare diseases', Annals of Internal Medicine, vol. 129, no. 2, pp. 107-113.
De Groen, Piet C. ; Barry, Jon A. ; Schaller, William J. / Applying World Wide Web technology to the study of patients with rare diseases. In: Annals of Internal Medicine. 1998 ; Vol. 129, No. 2. pp. 107-113.
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