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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.
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.
Background:
Congenital Heart Defects (CHD) are conditions that encompass more than 50 diagnoses and are due to developmental abnormalities early in fetal life. The King Faisal Specialist Hospital and Research Centre in the Kingdom of Saudi Arabia treats approximately 100 new cases per month. We recently developed a new CHD Registry that captures, stores and processes our data via the Internet.
Methods:
The Registry was developed using Hypertext Markup Language (HTML), Microsoft Active Server Pages and Microsoft Structured Query Language (SQL).
Results:
Details of CHD cases are captured in a World Wide Web (WWW) Registry, permitting any browser-enabled PC or Mac to participate fully in all registry functions, including data-entry, viewing, editing, searching, reporting, validating, charting, and exporting data subsets to statistics packages. It includes "administrative" features and an active security system. The paper forms have been designed to reflect the "look and feel" of the Web pages. Automatic validation procedures are also included.
Conclusions:
Our Registry has been in operation for 3 years. It serves 10 PCs and contains more than 3,000 registered cases of CHD. It is the first CHD Registry to be fully functional on the Internet. It is also the first dedicated CHD registry, and the first to routinely report on the full spectrum of CHD diagnoses. The WWW offers several logistical advantages to disease registries, especially those that represent large regions. It also offers the possibility of sharing resources between registries, facilitating the aggregation and analysis of disease data on a world-wide scale. This is useful for rare diseases such as CHD (see http://rc.kfshrc.edu.sa/chdr/demo/).