The birth defects registry is a compilation of birth defects reported on live birth certificates, infant death certificates, newborn and pediatric patient abstracts, and program and screening data such as the Hope program and newborn hearing screening data. Select data elements from each data source are retained in the birth defects registry, with access to other data elements when required. Data elements from each source are listed below. Users requesting access to record-level data should be aware that not all data elements included in the birth defects registry will be provided on data sets released to users outside the Department of Health and Senior Services.

Birth Certificate

The birth defects registry is based on the birth certificate. Birth defects reported on the birth certificate and all other data elements from that data set are part of the birth defects registry.

Death Certificate

For all deaths within the first year of life, cause of death (ICD-10-coded) and age at death are included in the registry, however, access to all death certificate data items is available as needed.

Newborn and Pediatric Patient Abstracts

For all inpatient and outpatient hospital encounters within the first year of life, routinely available data items are all reported diagnoses (ICD-9-CM-coded); admission and discharge dates; and type of hospital encounter (inpatient, outpatient, or emergency room). Access to all patient abstract data items is available as needed.

State Program/Screening Data

Data elements available vary by program. All programs and screening data included diagnosis (coded in ICD-9-CM upon inclusion in registry) and date of enrollment/screening.