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Outcomes and Long-Term Follow-up Unit

This section created in 2006 is responsible for evaluating outcomes related to the prenatal and newborn screening programs.  The current Section Chief is responsible for overseeing the outcome of pregnancy data received from the prenatal care providers for women who had one or more screen positive results or whom are pregnant with twins.  This data is received via a "Confidental Report of an Outcome of Pregnancy" form and is an important tool for tracking birth outcome including birth defects that are part of the GDSP registries (e.g. chromosomal defects, neural tube defects) and other birth outcomes (e.g. fetal and neonatal death). 

This Section also evaluates the relationship between specific prenatal and neonatal screening results and targeted developmental outcomes.  Examples of this work includes examination of the relationship between prenatal screening findings and birth outcomes (e.g. low-birth-weight birth, preterm birth, small-for-gestational-age birth).  Section staff are also examinig the feasibility of using existing maternal serum markers to identify newborns at risk for other major birth defects (e.g. congenital heart defects).  

With respect to the Newborn Screening Program, the Research Scientist IV, has developed a system to track short-term and long-term follow-up data for newborns who were identified with a confirmed diagnosis through the Newborn Screening Program. The short-term follow-up data system tracks all initial screen positive cases through the time the case is resolved as a confirmed disorders or until a disorder is definitively ruled out.   All confirmed cases continue to be tracked through a long-term follow-up system that is based on a yearly assessment of the child's status through age five. 

 
 
Last modified on: 11/5/2008 11:32 PM