What is the Alaska FAS Surveillance Project?

The Alaska FAS Surveillance Project was established in 1998 by the State’s Section of Maternal, Child, and Family Health, within the Division of Public Health. The Project was part of a collaborative effort with the Centers for Disease Control and Prevention (CDC) and four other states (Arizona, Colorado, New York and Wisconsin). These five states and CDC made up the National FAS Surveillance Network. Now funded through the Alaska Office of FAS, the FAS Surveillance Project monitors the prevalence of FAS in Alaska over time. Based on birth years 1995-1999, the most recent findings of the FAS Surveillance Project estimate an FAS Prevalence in Alaska of 1.5 per 1,000 live births, or that approximately 15 children are born with FAS every year in Alaska.

We also estimate that about 163 children (16.3 per 1,000 live births) born each year in Alaska are reported to the Alaska Birth Defects Registry as affected by prenatal alcohol exposure. The FAS Surveillance Project plans to conduct focused analysis on this larger group of children, especially looking at characteristics of the children who do not meet the surveillance case definition for full FAS.

What is the purpose of the Alaska FAS Surveillance Project?

In general, public health surveillance is used to determine the number of people in a population who have a specific health condition. FAS surveillance gives us a better understanding of how many Alaskan children are at risk for having an alcohol-related birth defect and how many of these meet the surveillance case definition for FAS. By looking at these numbers over a period of time, prevention efforts can be evaluated. For example, an indication that prevention efforts are working would be when the number of children with FAS decreases over several years.

In addition to determining the number of children in Alaska who have FAS, the Alaska FAS Surveillance Project also obtains demographic information and health characteristics about women who give birth to children with FAS. This information aids in regional prevention planning.

What are the goals and objectives of the Alaska FAS Surveillance Project?

• To develop a standard surveillance case definition for FAS that accurately reflects how many Alaskan children have FAS.
• To provide an accurate statistical number or prevalence of children in Alaska with FAS and compare these within regions of Alaska and Nationally.
• To provide demographic information about the mothers of children in Alaska with FAS for use in planning prevention programs.
• To provide information about children in Alaska with FAS for use in assessing the need for resources.

Who are the partners in the Alaska FAS Surveillance Project?

• Alaska Birth Defect Registry
• Centers for Disease Control and Prevention
• Alaskan Physicians, hospitals, clinics, and Public Health Nurses
• Alaska State Department of Health and Social Services Office of FAS

How are data collected?

The Alaska FAS Surveillance Project works closely with the Alaska Birth Defects Registry
(ABDR). FAS is a reportable condition in Alaska. Once a potential case has been reported to the registry, the registry coordinator notifies the FAS Surveillance Project coordinator and provides the necessary information for identification. Potential FAS cases are those reported with the ICD-9 diagnostic code 760.71. Medical providers use this code to indicate that the child’s mother consumed alcohol during pregnancy, and that the child may have an alcohol-related condition.

The FAS Surveillance Coordinator is responsible for collection of information from each identified medical record and determining if the child meets the FAS case definition. FAS Surveillance staff who are trained in state and federal confidentiality laws as well as medical documentation, review medical records for FAS diagnostic indicators. Data, such as birth weight, head circumference and prenatal use of alcohol, is entered into a secure database on site at reporting clinics and hospitals.

What information does the Alaska FAS Surveillance Project collect?

Alcohol-related birth defects exhibit a wide range of physical and functional features so the diagnosis of FAS is often subjective. This makes it difficult to compare the number of cases between different states or regions. A surveillance definition is used to standardize the criteria by which a determination of case status is made. The Alaska FAS Surveillance Project uses a surveillance case definition developed by the National CDC FAS Surveillance Network (FASSNet). An FAS case must have medical chart documentation of each of the following:

• Medical chart notation of at least two fetal alcohol syndrome facial feature characteristics or comment of "facial features consistent with FAS"
• Growth deficiency
• Central nervous system impairment

How can data from the FAS Surveillance Project be used?

Data is used to describe the distribution and determinants of FAS in Alaska. This is accomplished by:

• Examining Alaskan FAS prevalence rates compared to other states
• Looking at how prevalence varies by Alaskan geographic regions, race, maternal age and at-risk health factors

This information can be used to:

• Evaluate/strengthen prevention and service delivery programs
• Heighten public awareness and support funding for needed services including consultation, education and training for families and professionals serving children prenatally exposed to alcohol
• Examine FAS trends over time

Because FAS is preventable, one of Alaska’s top priorities is to support programs that conduct primary and secondary prevention activities. An efficient surveillance program is critical to improving service delivery and support to women at-risk for giving birth to an alcohol-affected child. Surveillance is an important component in the full range of Alaska’s efforts to reduce and eventually eliminate this devastating birth defect.