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Alaska Birth Defects Registry

Contact the Registry at: ​

  • Alaska Birth
    Defect Registry

    3601 C Street, Suite 358
    Anchorage, AK 99503
    (907) 269-8097 Phone
    (907) 754-3529 fax
    hssbirthdefreg@alaska.gov​
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  • Registery Milestones

  • 1996 Program Established
  • 1996 Program Established
  • 2005 Data book published
  • 2006 Registry expands data collection to six years of age
  • 2007 Registry includes collection of Medicaid data
  • 2012 Data Book published
  • 2014 Medical record review resumed on national congenital conditions
  • 2015 AKAIMS Data included in collection data
  • 2015 Transition from ICD-9 to ICD-10 CM
  • 2016 Data analytics preocesses updated
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About the Program

  • The Alaska Birth Defects Registry (ABDR) established in 1996 under the Alaska Administrative Code (7 AAC 27.012).
  • Health care providers, hospitals, and other healthcare facilities are required to report to the ABDR when they have cared for achild with a birth defect listed as a Condition Reportable to Public Health. A list of Alaska’s reportable birth defects and their International Classification of Disease Version 10(ICD-10) diagnosis codes is presented below.
  • Public health surveillance systems such as the ABDR provide information on the occurrence and distribution of reportable health conditions within populations.
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  • Registry Data Uses:​
  • - Estimate the prevalence of congenital anomalies within populations and investigate unusual patterns of occurrence.
  • - Monitor the prevalence of birth defects in populations with identifiable or preventable exposures, and determine whether known exposures have increased the risk of birth defects.
  • - Conduct analytic studies of high prevalence conditions to elucidate possible etiologies and prevention strategies.
  • - Provide scientific foundation for evidence-based decision making.
  • - Observe and evaluate the effects of interventions and policy changes.​
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  • Registy Operations
  • ABDR conducts passive surveillance with data collection relying on mandatory reporting by health care providers. Surveillance protocols for the state of Alaska are as follows:
  • - The reporting facility screens patient records for reportable ICD-9 codes and submits quarterly reports to the ABDR.
  • - Reports to the ABDR include: date of service, child’s name, birth and diagnosis date, and diagnosis information.
  • - The ABDR is a multiple-source registry, collecting information from major hospitals, specialty clinics and medical record aggregators.
  • - A single child may be reported to the registry several times from multiple agencies, and for one or more congenital conditions.
  • - Unique individuals are linked to Vital Statistics data to establish in state birth. 
  • - Data is maintained for all unique individual and defect combinations reported. 
  • - Individual data and personal identifiers are not released by the registry. Only summarized data are reported.
  • - A copy of the Alaska Birth Defects Registry Reporting Guide is included as a link.
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  • Congenital Defect Codes (ICD-10)
  • D55 - D900, D55 - D589 Anemia
  • D6107 Constitutional aplastic anemias
  • D6109 Constitutional aplastic anemias
  • D80 - D899 Immunodeficiencies
  • E00-E900, E00 - E009 Congenital iodine-deficiency syndrome
  • E030-E039 Congenital hypothyroidism
  • E25 - E259 Adrenogenital disorders
  • E70 - E729 Metabolic disorders
  • E74 - E7429 Metabolic disorders
  • E76 - E769 Metabolic disorders
  • E7871 Other specified congenital anomalies
  • E7872 Other specified congenital anomalies
  • E80 - E807 Metabolic disorders
  • E84 - E889 Metabolic disorders
  • G11-G95, G11 - G129 Spinal disorders
  • G31 - G3289 Degenerative diseases of nervous system
  • G71 - G737 Primary disorders of muscles
  • G80 - G809 Cerebral palsy
  • G901 Familial dysautonomia [Riley-Day]
  • G910-G912 Hydrocephalus
  • G937 Other disorders of brain: Reye's syndrome
  • G94 Other disorders of brain in diseases classified elsewhere
  • H35-H920 and H3552 Pigmentary retinal dystrophy
  • H49819 Kearns-Sayre syndrome
  • H90 - H9193 Hearing loss
  • P00 - P049 Certain conditions originating in the perinatal period
  • Q00 - Q999 Congenital malformations
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