What is the Alaska Birth Defects Registry?

Established in January 1996 under the Alaska Administrative Code (7 AAC 27.012), the Registry is a surveillance program that provides reliable, valid, and timely information on the number of infants and young children with birth defects in Alaska.

What is the purpose of the Alaska Birth Defects Registry?

The purpose of the Alaska Birth Defects Registry is to be a reliable, valid, and timely information source for ascertaining the number of infants and young children with birth defects in Alaska. The Registry also participates in public awareness education campaigns, such as the Alaska Folic Acid Campaign through the Alaska Folic Acid Coalition, to reduce the prevalence of serious birth defects, and is the foundation of the Alaska Fetal Alcohol Syndrome Surveillance Project.

What are the goals and objectives of the Alaska Birth Defects Registry?

• Monitor trends to learn more about the occurrence of birth defects in Alaska
• Perform statewide epidemiological surveillance for all reportable birth defects
• Provide an accurate, unduplicated, count of children with birth defects to other programs and agencies for program planning
• Provide statistics to public health programs and health care professionals for use in planning and evaluation
• Identify potential areas of unmet need
• Help prevent secondary disabilities by making recommendations concerning special services needed in local communities

Who are the partners in the Alaska Birth Defects Registry?

The Alaska Birth Defects Registry is administered by the Department of Health and Social Services, Section of Women's, Children's and Family Health, Maternal and Child Health Epidemiology Unit. The Registry relies on multiple source reporting from health care providers throughout the State.

How are data collected?

The registry is a population-based surveillance system of the birth defects as defined by the International Classification of Diseases, 9th ed. Guidelines for Birth Defects Reporting can be found in the Alaska "Conditions Reportable to Public Health". Physicians, hospitals, and other health care facilities and providers must report children from birth up to six years of age who have any of the Reportable Birth Defects. Children affected by alcohol via placenta or breast milk (ICD-9 Code 760.71), including fetal alcohol syndrome, or children affected by maternal conditions which may be unrelated to present pregnancy (ICD-9 Code 760), must be reported up until their 6th birthday. Reports should be submitted within 3 months of diagnosis or treatment. Information should be entered on a Birth Defects Registry Form, and reports can be made via written, fax, phone, or computer disk, and should be submitted to the Alaska Birth Defects Registry Coordinator. All information is kept confidential under Alaska Administrative Code 7AAC 27.890.

What information does the Alaska Birth Defects Registry collect?

To be included in the ABDR, a child must have been born to a woman who was a resident of the State of Alaska at the time of the child’s birth, and be diagnosed as having one of the eligible conditions. Children meeting these criteria are identified from computer linkage of information from vital statistics (birth and death certificates), hospitals, physicians, and other health care providers.

The ABDR has established codes 740-759 as Reportable ICD-9 codes. In addition, the ABDR has chosen to be more inclusive than other registries by including neurofibromatosis, congenital hypothyroidism, adrenogenital disorders, disorders of metabolism and immune mechanism, hereditary hemolytic anemias, aplastic anemia, cerebral degenerations, spinocerebellar disease, anterior horn cell disease, infantile cerebral palsy, muscular dystrophies, pigmentary retinal dystrophy, and conditions such as Fetal Alcohol Syndrome as reportable conditions (ICD-9 codes 237.7, 243, 255.2, 277, 279,282, 284.0, 331, 334, 335, 343, 359, 362.74, 389.0-389.9, 760, 760.71 respectively).

How can data from the Alaska Birth Defects Registry be used?

• To assist health professionals in incorporating the latest surveillance findings into their standards of practice.
• To monitor progress towards local, state, and national health objectives and goals.
• To identify risk factors for sentinel birth defects.
• To target and monitor prevention programs.