Appendix DD24-0051.pdf

CDC-RFA-DD-24-0051: Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults

Required Data Elements

March 2024

Data Element Transmit to CDC (Yes/No)

Demographics

Date of birth No

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

Sex Yes

Language Yes

Marital status Yes

Employment status Yes

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 Asian Yes

Race American Indian or Alaska Native Yes

Race Native Hawaiian or Other Pacific Islander Yes

Multiracial Yes

Death Information

Cause of death type Yes

Cause of death Yes

Coding system of death certificate Yes

Age at death (in days) Yes

Day of death (1-31) No

Month of death (1-12) No

Year of death; 4-digit year Yes

Date of death No

County of death No

State of death No

Birth Certificate/Registry Information

Date of birth from birth certificate No

Year of birth from birth certificate; 4-digit year Yes

Marital status Yes

Maternal Street1 No

Maternal Street2 No

Maternal City No

Maternal Zip Code No

Maternal County No

Maternal State (2-digit state code) Yes

Maternal Census Tract No

Fertility treatment Yes

Fertility treatment description Yes

Method of delivery Yes

APGAR score at 1 minute Yes

APGAR score at 5 minutes Yes

APGAR score at 10 minutes Yes

Assisted ventilation 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 Education Yes

Maternal Ethnicity 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

Maternal WIC Yes

Paternal age at delivery (in years) Yes

Paternal Education Yes

Paternal Ethnicity 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

Prenatal Care Yes

Prenatal Care Type 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

Procedure Ripening Yes

Procedure Tocolysis Yes

Insurance Yes

Insurance Other, Specify Yes

Newborn Surfactant Replacement Therapy Yes

Newborn NICU Admission Yes

Diagnosis Code(s) from the birth defects registry Yes

Descrip>on 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 ac>ve or passive birth defects registry Yes

Cri�cal 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 descrip>on 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

Year of encounter Yes

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

Height in inches Yes

Weight in pounds Yes

Body Mass Index Yes

Address Geocoding

Timepoint of address geocoding (e.g., birth, death) Yes

Date address collected No

Year of address capture Yes

Address match 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