Project Description:
The diverse group of structural, developmental and behavioral abnormalities resulting from prenatal alcohol exposure is referred to as Fetal Alcohol Spectrum Disorders (FASD). Fetal Alcohol Syndrome (FAS) is the most severe disorder in this spectrum and is widely considered to be the most common preventable cause of birth defects and developmental disabilities in developed countries. The personal burden of FAS may be striking, and affected children and their families often find it difficult to cope with the medical, developmental, adaptive and social effects of this disorder. Estimates of how frequently FAS occurs vary widely among studies in the United States and in other countries. FAS and partial FAS occur in 90 per 1,000 children in the Western Cape Province of South Africa, while the highest reported frequency in the United States is about 4 per 1,000 in Alaskan Natives. The Fetal Alcohol Syndrome Surveillance Network (FASSNET) was previously funded by the Centers for Disease Control and Prevention (CDC) to develop a population-based, multiple source surveillance system for FAS. The methods of the FASSNET surveillance system have been published as well as results from the participating sites. In 2008 the CDC reported results of a planning meeting to determine best practices for population-based surveillance of FAS.
Arizona served as a member of the original FASSNET through funding to the University of Arizona (UA), which was designated by the Arizona Department of Health Services (ADHS) as the bona fide agency to conduct surveillance of FAS. We will partner with the Nevada State Health Division (NSHD) to obtain a combined surveillance population of almost 140,000 births per year. The objective is to integrate FAS surveillance into the existing population-based surveillance programs in each state, which include a program that identifies and reports cases of Autism Spectrum Disorders (ASD) and mental retardation in Maricopa County, Arizona; one that conducts surveillance in Arizona for Duchenne and Becker Muscular Dystrophy; and the surveillance programs for birth defects in AZ and NV. The FAS surveillance program will use similar methods to conduct case finding, abstract healthcare records, upload the abstracted records into a database, evaluate the methods and quality of the data collected, conduct analyses to determine how frequently FAS occurs in each state, and disseminate the information to our stakeholders. The new FAS surveillance network will determine the FAS case definition and methods for clinical reviews of suspected cases by consensus. The sources for case finding in each state will include the birth defects programs; genetics and other specialty clinics; hospitals; state programs for developmental disabilities; and other healthcare facilities in which potential FAS cases are likely to be evaluated. The system will operate with the cooperation of the Navajo and Tohono O?odham nations. Collaborative agreements already exist with most of the sources through the existing surveillance programs. Provider training and education programs will be implemented to improve the identification of FAS cases.
Keyword(s):
fetal alcohol syndrome, surveillance, prevalence, health outcomes
