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CDC-RFA-DD-24-0051: Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults Required Data Elements
| Data Element |
| Transmit to CDC (Yes/No) |
Demographics
| Day of date of birth (1-31) |
| No |
| Month of date of birth (1-12) |
| No |
| Year of date of birth. 4-digit year |
| No |
| Educational level attained |
| Yes |
| Special educational services received |
| Yes |
| Ethnicity (Hispanic, Non-Hispanic, Unavailable, Unknown) |
| Yes |
| Race White or Caucasian |
| Yes |
| Race Black or African American |
| Yes |
| Race American Indian or Alaska Native |
| Yes |
| Race Native Hawaiian or Other Pacific Islander |
| Yes |
Death Information
| Coding system of death certificate |
| Yes |
| Age at death (in days) |
| Yes |
| Year of death; 4-digit year |
| Yes |
Birth Certificate/Registry Information
| Date of birth from birth certificate |
| No |
| Year of birth from birth certificate; 4-digit year |
| Yes |
| Maternal State (2-digit state code) |
| Yes |
| Fertility treatment description |
| Yes |
| APGAR score at 1 minute |
| Yes |
| APGAR score at 5 minutes |
| Yes |
| APGAR score at 10 minutes |
| Yes |
| Assist ventilation 6Hrs |
| Yes |
| Gestational age (in weeks) |
| Yes |
| Parity if given on the birth certificate |
| Yes |
| Plurality of index pregnancy |
| Yes |
| Maternal age at delivery (in years) |
| Yes |
| Maternal height (in inches) |
| Yes |
| Maternal weight at delivery (in pounds) |
| Yes |
| Maternal weight prior to delivery (in pounds) |
| Yes |
| Maternal Race - American Indian or Alaska Native |
| Yes |
| Maternal Race - Asian |
| Yes |
| Maternal Race - Black or African American |
| Yes |
| Maternal Race - Native Hawaiian or Pacific Islander |
| Yes |
| Maternal Race - White |
| Yes |
| Maternal Race - Multiracial |
| Yes |
| Maternal Race - Unavailable |
| Yes |
| Race Unknown, Null & Refused |
| Yes |
| Paternal age at delivery (in years) |
| Yes |
| Paternal Race - American Indian or Alaska Native |
| Yes |
| Paternal Race - Asian |
| Yes |
| Paternal Race - Black or African American |
| Yes |
| Paternal Race - Native Hawaiian or Pacific Islander |
| Yes |
| Paternal Race - White |
| Yes |
| Paternal Race - Multiracial |
| Yes |
| Paternal Race - Unavailable |
| Yes |
| Race Unknown, Null & Refused |
| Yes |
| Number of previous births |
| Yes |
| Number previous livebirths still alive at time of this birth |
| Yes |
| Number previous livebirths dead at time of this birth |
| Yes |
| Number previous pregnancy terminations at time of this birth |
| Yes |
| Procedure Amniocentesis |
| Yes |
| Insurance Other, Specify |
| Yes |
| Newborn Surfactant Replacement Therapy |
| Yes |
| Newborn NICU Admission |
| Yes |
| Diagnosis Code(s) from the birth defects registry |
| Yes |
| Description of the code(s) |
| Yes |
| Coding system used in the birth defects registry |
| Yes |
| Provider Type for code(s) used in birth defects registry |
| Yes |
| Code recorded is from an active or passive birth defects registry |
| Yes |
Critical Congenital Heart Defects Screening Data
| Age in days from DOB to CCHD Screening |
| Yes |
| O2 SAT right foot (final) (in percentage) |
| Yes |
| O2 SAT right hand (final) (in percentage) |
| Yes |
| Final pulse oximetry CCHD screening result |
| Yes |
| Screening algorithm used |
| Yes |
| Screening algorithm used, other description |
| Yes |
| Infant referred to a cardiologist or hospital |
| Yes |
| Date of CCHD Screening |
| No |
Healthcare Encounter Data Elements
| Encounter type (inpatient, outpatient, ER, other) |
| Yes |
| Month/Day/Quarter of encounter |
| No |
| All ICD-10 diagnosis codes (CHD and Non-CHD) |
| Yes |
| Length of stay (inpatient encounters only, calculated by site) |
| Yes |
| Provider type associated with encounter diagnoses (pediatric cardiologist, ACHD cardiologist, cardiothoracic surgeon, general cardiologist, non-cardiac provider) |
| Yes |
| All procedure codes at healthcare encounters: ICD9CM procedure codes, ICD10 procedure codes, CPT codes and CDT dental procedure codes |
| Yes |
| Insurance type at encounter (public, private, self-pay/uninsured, other government insurance) |
| Yes |
| Vital status at encounter (Alive or Died) |
| Yes |
| Source of the data for this entry (site-specific data source names) |
| Yes |
| Service location of all encounters (type (hospital, clinic, ambulatory surgery center, other) address, city, state, zip code |
| Yes |
| Age in Days at the encounter |
| Yes |
| Length of Stay calculated for INPATIENT stays (in days) |
| Yes |
| Day of the start date of encounter (1-31) |
| No |
| Month of the start date of encounter (1-12) |
| No |
| Year of the start date of encounter; 4-digit year |
| Yes |
| Day of the end date of encounter (1-31) |
| No |
| Month of the end date of encounter (1-12) |
| No |
| Year of the end date of encounter; 4-digit year |
| Yes |
| Full and actual end date of the encounter |
| No |
| Full and actual start date of the encounter |
| No |
Address Geocoding
| Timepoint of address geocoding (e.g., birth, death) |
| Yes |
| Date address collected |
| No |
| Year of address capture |
| Yes |
| Method of address match (automatic match, manual match) |
| Yes |
| Geocoded address type (point address, parcel, etc.) |
| No |
| Match score of geocoding (0-100 numeric) |
| Yes |
| Select data elements of census tract applicable to a Neighborhood Deprivation Index as determined by collaborative group (e.g., percent households with a high school degree or higher) |
| Yes |
March 2024
