The Registry is a prospective database of detailed demographic,
diagnostic and genetic information on patients and their families.
The purpose of the Registry is to engage in scientific and educational
activities promoting and fostering research in congenital and
acquired heart disease. Ultimately, it is hoped that the Registry
will aid in determining the etiology and in preventing heart disease
in pediatrics.
A web-based information system is designed and implemented to
carry out the study. The system consists of five processes: identification,
contact, consent, data collection and data analysis. The architecture
of the system is a 3-tier application: a web site, a database
and applications to provide flexible but secure accessibility,
large scale data loading and process ability and resolving complex
data object. The security procedures are provided to be met the
Health Insurance Portability and Accountability Act (HIPAA). The
applications include questionnaire and registry interface. The
questionnaire is developed to get environmental and genetic information
on patients and families with congenital heart disease. The registry
interface is allowed registry coordinator to enter or query patient'
demographic, diagnostic, registration and DNA testing information,
and provide the reports to registry coordinator or team members.
