file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Electronic scanning of printed records Database collection and storage: Access, Mainframe, Web based database Data Analysis Data analysis software: SAS, Access, Arc GIS Quality assurance: Validity checks, Comparison/verification between multiple data sources, 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, Observed vs. expected analyses, Epidemiological studies (using only program data), Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, Provider education System Integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: We are integrated with the newborn metabolic and Early Hearing and Detection Intervention Program. Vital Records electronically imports into the Maven Newborn Screening System (NSS). This database also links with the Childhood Lead Program, the Children and Youth with Special Health Care Needs program, and development is currently ongoing to include Family Wellness Healthy Start. Funding Funding source: 80% General state funds, 20% MCH funds Other Web site: https://portal.ct.gov/DPH/Family-Health/Birth-Defects-Registry/Connecti cut-Birth-Defects-Registry Surveillance reports on file: NBDPN annual reports, state profiles Contacts Karin C Davis, BS Public Health Connecticut Department of Public Health 410 Capitol Avenue, MS #11MAT Hartford, CT 6134 Phone: (860) 509-7499 Fax: (860) 509-7720 Email: karin.davis@ct.gov STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY S134 Birth Defects Research 111: S1-S180 (2019) Delaware Delaware Birth Defects Registry (DBDR) Purpose: Surveillance Partner: Local Health Departments, Hospitals, Birthing Centers, Newborn Screening, Delaware Healthy Mothers and Infants Consortium Program status: Currently collecting data Start year: 2010 Earliest year of available data: 2007 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 11,000 Statewide: Yes Current legislation or rule: House Bill No. 197, an act to amend Title 16 of the Delaware Code relating to Birth Defects Legislation year enacted: 1997 Case Definition Outcomes covered: Selected major birth defects, selected metabolic defects, genetic diseases, and fetal/infant morality. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 week gestation and greater or greater than 350 grams.), Elective terminations (20 week gestation and greater or greater than 350 grams.) Age: Birth to 1 year Residence: In-state births to state resident Surveillance Methods Case ascertainment: Active Case Finding Vital records: Birth certificates, Death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Cancer registry, AIDS/HIV registry, Newborn blood spot screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, High risk pregnancy logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Midwifery Facilities 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), All stillborn infants, All neonatal deaths, All prenatally diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM/ICD-10-CM 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.),