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), Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, Environmental Studies System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases Funding Funding source: 26% General state funds, 31% Service fees, 43% CDC grant Other Web site: http://www.cdphe.state.co.us Contacts Margaret Frances Ruttenber, MSPH Colorado Respond to Children with Special Need Section 4300 Cherry Creek Drive, South Denver, Colorado 80246-1530 Phone: 303-692-2636 Fax: 303-691-7930 Email: margaret.ruttenber@state.co.us Carol Stanton, MBA Colorado Respond to Children with Special Need Section 4300 Cherry Creek Drive, South Denver, Colorado 80246-1530 Phone: 303-692-2621 Fax: 303-691-7930 Email: carol.stanton@state.co.us STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY S133 Birth Defects Research 111: S1-S180 (2019) Connecticut Connecticut Birth Defects Registry (CT BDR) Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Reporting for Maternal and Child Health Block Grant Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start year: 2002 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 37,000 Statewide: Yes Current legislation or rule: Section 19a-53 (Formerly Sec. 19-21) of the general statutes was replaced (Effective October 1, 2017) Legislation year enacted: 2017 Case Definition Outcomes covered: All major structural birth defects; biochemical, genetic and hearing impairment through linkage with Newborn Screening System; any condition which places a child at risk for needing specialized medical care (i.e., complications of prematurity, cancer, trauma, etc.) ICD-9 codes 740 thru 759.9 and 760.71 (prior to ICD10 implementation still in the system although can no longer be selected). ICD10 codes include the entire Q series as well as some recommended by CDC in the provided crosswalk. Also Zika associated birth defects including those in ICD10 H series are included. Pregnancy outcome: Livebirths (All gestational ages and birth weights, PDA >= to 2500 grams birth weight) Age: Up to one year after delivery for birth defects, but reported up to age 5 Residence: All in-state births are reported but reporting is done on in-state births to state residents Surveillance Methods Case ascertainment: Passive case-finding without case confirmation, All Zika associated birth defects as identified by the United States Zika Birth Defects Surveillance System (USZBDS) are currently rapid ascertainment (within 12 hours of being entered) and referred to the Connecticut Department of Health (CT DPH) Infectious Disease program for follow-up to see if a Zika association is connected. Vital records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate, inpatient hospitalizations and emergency room visits Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Developmental Disabilities Surveillance Delivery hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in newborn nurseries and NICUs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in pediatric inpatient and outpatient services planned for future Other sources: Midwifery Facilities, Physician reports, Mandatory reporting by health care providers and facilities; Children and Youth with Special Health Care Needs (CYSHCN) Programs; Newborn Screening System (for genetic disorders and hearing impairment). Case Ascertainment Conditions warranting chart review in newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Coding: 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, 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.), Illnesses/conditions Data Collection Methods and Storage Data collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic