Design and development of an Internet registry for congenital heart defects

Wajeeh Mitri1, Amy L Sandridge, Shazia Subhani

  • 1Biostatistics, Epidemiology and Scientific Computing Department, King Faisal Specialist Hospital and Research Centre, Riyadh 11211, Saudi Arabia.

Teratology
|February 22, 2002
PubMed

Insights

A new Congenital Heart Defects (CHD) registry is fully functional on the Internet, enabling comprehensive data management and analysis for over 3,000 cases. This innovative online platform facilitates global collaboration for rare disease research.

Area of Science:

  • Medical Informatics
  • Cardiology
  • Public Health

Background:

  • Congenital Heart Defects (CHD) comprise over 50 diagnoses resulting from early fetal developmental abnormalities.
  • King Faisal Specialist Hospital and Research Centre manages approximately 100 new CHD cases monthly.
  • A novel CHD Registry was developed to capture, store, and process patient data online.

Purpose of the Study:

  • To establish an internet-based registry for Congenital Heart Defects (CHD).
  • To facilitate comprehensive data management, including entry, viewing, searching, and reporting.
  • To leverage World Wide Web technology for disease registry operations.

Main Methods:

  • The registry was developed using Hypertext Markup Language (HTML), Microsoft Active Server Pages, and Microsoft Structured Query Language (SQL).
  • Web pages were designed to mirror paper forms, incorporating automatic validation and security features.
  • Internet accessibility allows participation from any browser-enabled PC or Mac.

Main Results:

  • The CHD Registry has been operational for 3 years, serving 10 PCs and containing over 3,000 registered cases.
  • The registry is fully functional on the Internet, offering complete data management capabilities.
  • It is the first dedicated CHD registry to routinely report on the full spectrum of diagnoses.

Conclusions:

  • The World Wide Web provides significant logistical advantages for disease registries, particularly for large regions.
  • The online registry facilitates resource sharing and data aggregation for rare diseases like CHD on a global scale.
  • This platform enables enhanced analysis and research for Congenital Heart Defects.
Abstract

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