Evaluation of Fetal Alcohol Syndrome (FAS) Using New Jersey's Birth Defect Registry

BACKGROUND:  Fetal Alcohol Syndrome (FAS) is the most severe form of Fetal Alcohol Spectrum Disorders (FASDs), a group of conditions that occur in a person whose mother drank alcohol during her pregnancy.  Several studies have indicated that the incidence of FAS ranges from 0.5 to 2.0 cases per 1,000 live-born infants.  Healthcare providers are mandated to report cases of FAS under age six to the New Jersey Birth Defects Registry (NJBDR), the primary surveillance system for FAS.  New Jersey also has six FAS Diagnostic Centers (FASDCs) which were created to provide a comprehensive evaluation for FAS and other FASDs.  An evaluation of the statewide surveillance of this condition was conducted to assess the overall effectiveness of the system and provide recommendations for improvements.

METHODS:  The reporting of FAS to the NJBDR was evaluated using several surveillance system attributes from the Centers for Disease Control and Prevention’s Updated Guidelines for Evaluating Public Health Surveillance Systems including:  an analysis of the current number of children with FAS registered to the NJBDR, the number of children reported to have FAS from the FASDCs, and electronic birth certificate data.  Analyses were conducted using SAS v9.3 statistical software.

RESULTS:  The data quality of FAS surveillance in the NJBDR is low; a result attributed to FAS cases being underreported.  35% (11/31) of cases captured at the FASDCs were missing from the NJBDR.  In addition, FASDCs provided data to NJDOH using age ranges that do not coincide with the rules and regulations for NJBDR case reporting, ultimately not allowing data values to be compared.  Most providers do not differentiate between FAS and other FASD spectrum disorders consequentially making it difficult to compare their FAS counts to those of the NJBDR.  While reporting of FAS to the NJBDR is low, the registry is successful in linking registered children with local special child health county case management units and early intervention programs.

CONCLUSIONS:  Preliminary results indicate that improving the data quality of FAS surveillance in the NJBDR will require a change in the reports attained from the FASDCs and providers; the confirmed cases of FAS would be more informative if collected by age ranges that concur with the NJBDR age ranges.  Given that brain function abnormalities of FAS are more apparent later in child development, the NJBDR should consider increasing the FAS reporting age as a way to potentially capture cases diagnosed later in childhood and link those children to appropriate services.