(laptop, web-based, etc.) Database collection and storage: SQL server Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Capture-recapture analyses, Observed vs. expected analyses, Epidemiological studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Grant proposals, Education/public awareness System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, link registry to final vital records birth, fetal death, death and birth cohort files Funding Funding source: 100% Other (Fee-based Special Funds) Other Web site: https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/cbdmp/default.asp x Surveillance reports on file: California-specific birth defect data available: select defect-specific data sheets, annual surveillance report, and county-level estimates Additional information on file: Please send inquiries to gdspcbdmp@cdph.ca.gov Contacts Valorie Eckert, MPH California Birth Defects Monitoring Program/Genetic Disease Screening Program/California Department of Public Health 1615 Capitol Avenue Sacramento, CA 95814 Phone: 916-341-6674 Fax: 916-341-6499 Email: Valorie.Eckert@cdph.ca.gov Barbara Warmerdam California Birth Defects Monitoring Program/Genetic Disease Screening Program/California Department of Public Health 1615 Capitol Avenue Sacramento, CA 95814 Phone: 916-341-6677 Fax: 916-341-6499 Email: Barbara.Warmerdam@cdph.ca.gov STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY S131 Birth Defects Research 111: S1-S180 (2019) Centers for Disease Control and Prevention Metropolitan Atlanta Congenital Defects Program (MACDP) Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Laboratories, Prenatal Diagnostic Providers Program status: Currently collecting data Start year: 1967 Earliest year of available data: 1968 Organizational location: CDC, National Center on Birth Defects and Developmental Disabilities Population covered annually: 35000 Statewide: No, Births to mothers residing within one of three central counties in the metropolitan Atlanta area of the state of Georgia Case Definition Outcomes covered: All major structural and genetic birth defects Pregnancy outcome: Livebirths (>=20 weeks), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages) Age: Before 6 years of age Residence: Births to mothers residing in one of three central metropolitan Atlanta counties Surveillance Methods Case ascertainment: Active Case Finding Vital records: Birth certificates Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Induction logs and miscarriage logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories Case Ascertainment Conditions warranting chart review in newborn period: Any chart with an ICD-9-CM code 740-759/ICD-10-CM code Q00-Q99, Any chart with a selected list of ICD-9-CM codes outside 740-759/ICD-10-CM codes outside Q00-Q99, Any birth certificate with a birth defect box checked, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Infants with low birth weight or low gestation (Birth weight < 2500 grams and/or 20-36 weeks gestation ), All stillborn infants, All elective abortions, All neonatal deaths, All infants in NICU or special care nursery, All infants with low APGAR scores, All prenatally diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Any infant with a codable defect Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff