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Alaska Birth Defects Registry

Contact the Registry ​

Alaska Birth
Defect Registry

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

Registery Milestones

  • 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

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 a child with a congenital birth defect listed below.

Public health surveillance systems such as the ABDR provide information on the occurrence and distribution of reportable health conditions within populations.

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.​

Registy Operations

ABDR conducts a modified passive surveillance system. Data collection relies on reporting by major hospitals, specialty clinics and medical record aggregators.

Surveillance is conducted as follows:

  • The reporting facility screens patient records for reportable ICD-10 codes and submits reports to the Registry.
  • Data includes: date of service, child’s name, birthdate, diagnosis information, and reporting agency information.
  • Unique individuals are linked to Vital Statistics data to establish in state birth.
  • Data is maintained for all unique individual and defect combinations reported.
  • Individuals with specific conditions are sampled and medical record reviews are completed to determine reporting error rates for conditions.
  • Individual data and personal identifiers are not released by the registry. Only summarized data are reported.

Data Collection

Data is collected for the following Congenital Defect Codes and Ranges (ICD-10 CM)*

  • 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

* Note: The above list is presented for simplicity. ABDR collectes specific codes from wihin the ranges identified above. The Registry parses any submitted data for these specific collection codes. All other data is ignored.