Congenital Disorders Clinical Trial
Official title:
Prevalence and Clincial Spectrum of the 22q11 Deletion: A Population Based Study of Children and Congenital Heart Defects
The purpose of this project is to conduct population based surveillance for prenatally diagnosed congenital defects amount residents of the five counties to: improve the comprehensiveness of the Metropolitan Atlanta Congenital Defects Program (MACDP) to (1) better fulfill its objectives (2) allow assessment of the impact of prenatal diagnosis and elective termination on the birth prevalence of congenital defects in Atlanta (3) develop a registry of prenatally diagnosed defects to be used in epidemiologic and genetic studies, in evaluation prevention programs and in monitoring prenatal diagnostic technology.
Since 1967, The Centers for Disease Control and Prevention (CDC) has conducted surveillance
of birth defects in metropolitan Atlanta through review of hospital delivery and newborn
medical records and records from various other medical sources in the five central counties
of the metropolitan area (Clayton, Cobb, DeKalk, Fulton and Gwinnett, and has been expanded
to include prenatal records. The project was begun n the aftermath of thalidomide and
rubella epidemics as a kind of early-warning system for new or resurgent teratogens. The
voluntary participation of Atlanta hospitals was sought and obtained at the inception of the
system (the original system was a joint effort of the CDC, the Georgia Institute of Mental
Health and Emory University).
A case must be diagnosed by the child's sixth birthday or within six years of the date of
elective termination.
Children's Healthcare is one retrospective source of medical records reviewed for discharge
summaries and disease indices.
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Observational Model: Defined Population, Time Perspective: Longitudinal
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