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The Registry

Who’s in the Registry?

Babies born with birth defects listed in codes 740-759 of the International Classification of Diseases (ICD) are generally included in the registry if their mothers are residents of one of the following counties: Fresno, Kern, Kings, Los Angeles, Madera, Merced, San Francisco, San Joaquin, Santa Clara, Stanislaus or Tulare.

Codes 740-759 include:

  • Structural birth defects such as missing limbs and malformed organs
  • Chromosome abnormalities like Down syndrome
  • Birth defects patterns such as fetal alcohol syndrome.

The registry does not include infants with:

  • Metabolic and/or inherited diseases such as cystic fibrosis and sickle cell anemia
  • Functional problems without obvious structural elements like mental retardation and deafness
  • Poor pregnancy outcomes such as low birth weight and prematurity.

What Information is Included?

The following information is collected from a baby’s hospital records and entered into the registry data base:

  • Facility name – hospital or genetic center where the baby was treated
  • Date first seen – admission date to that facility
  • Chart number – hospital’s medical record number
  • Birth weight
  • Estimated gestational age – age at birth based on date of conception
  • Date and hour of birth
  • Sex: male, female, ambiguous, unknown
  • Facility/county of birth – if a home birth, this would be noted
  • Other facilities where data is collected on this child – other hospitals or genetic centers where the baby was seen/treated up to age 1
  • Father’s name
  • Mother’s name
  • Child’s name, AKA (also known as) – all names by which the baby is known
  • Birth address – mother’s address at time of birth
  • Other addresses – other residences noted in hospital records
  • Birth status – live birth, still birth (more than 19 weeks after conception), miscarriage (less than 20 weeks after conception), pregnancy terminated
  • Date expired – date of death
  • Facility/county of death
  • Autopsy – was one performed?
  • Cytogenetics – results of the test to determine a chromosomal abnormality, such as Down syndrome
  • Plurality – single or twin, triplet or other multiple birth
    • If twin: monozygotic/dizygotic – identical or fraternal
    • Confirmation – physical examination or blood tests
    • Condition of co-twin, stillborn?
  • Diagnoses: for each diagnosis, the following information is recorded:
    • Confirmation date and type – the test or procedure done to confirm the diagnosis
    • Subspecialist – the training level of the clinician making the diagnosis, e.g. intern, pediatrician, cardiologist
    • Precision – qualifying information that conveys certainty of diagnosis, e.g. possible, probable, appears
  • Nonreportable diagnoses – diagnoses which are not included in the registry but are noted if the baby also has a birth defect that is included in the registry
  • Diagnostic tests and procedures: name and results of test to confirm a diagnosis
  • Mother’s exposures: alcohol, illicit drugs, tobacco, seizures, medications, diabetes, other illnesses
  • Father’s use of illicit drugs/alcohol
  • Family history of birth defect
  • Consanguinity – was there a blood relationship between the parents, e.g. first cousins
  • Father: race/ethnicity, Spanish origin, current occupation/industry, date of birth, age
  • Mother: race/ethnicity, Spanish origin, current occupation/industry, gravida (total number of pregnancies), para (total number of deliveries, live or stillborn), last menstrual period, estimated date of confinement (due date), month prenatal care began
  • Fetal age by sonography – date of first ultrasound and age of fetus by weeks
  • Live births: concerning other children the mother has borne, how many are now living or dead?
  • Terminations: concerning other pregnancies, were any terminated before 20 weeks, 20 weeks and after and/or of unknown gestation