Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Redcap 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 Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Observed vs. expected analyses, Epidemiological studies (using only program data) Funding Funding source: 40% General state funds, 60% MCH funds Other Web site: Surveillance reports on file: Analysis of the 2007-2012 Delaware Birth Defects Registryhttps://dhss.delaware.gov/dhss/dph/chca/dphbdr1.html Contacts Louis E Bartoshesky, MD, MPH Christiana Care Health System 4735 Ogletown Stanton Road, Map 116 Newark, DE 19718 Phone: 302-733-4200 Fax: 302-733-5044 Email: lbartoshesky@ChristianaCare.org STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY S135 Birth Defects Research 111: S1-S180 (2019) District of Columbia DC Birth Defects Surveillance System (DC BDSS) Purpose: Surveillance, Referral to Services Partner: Hospitals, Help Me Grow Program status: Currently collecting data Start year: 2017 Earliest year of available data: 2015 Organizational location: Department of Health (Center for Policy, Planning, and Evaluation) Population covered annually: 9300 Statewide: Yes Current legislation or rule: TBD Case Definition Outcomes covered: Any birth defect will be collected with focus on major birth defects Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: 2 years Residence: In-state resident at birth or time of report Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital records: Birth certificates, Death certificates, Fetal birth certificate Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index Other sources: Physician reports Case Ascertainment 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, 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.) Data Collection Methods and Storage Data collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: REDCap Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Observed vs. expected analyses, Education/public awareness System Integration System links: Link case finding data to final birth file Contacts Preetha Iyengar, MD DC Health, Center for Policy, Planning, and Evaluation 899 North Capitol Street, NE 6th Floor Washington, DC 20002 Phone: 202-442-8141 Fax: 202-442-8060 Email: preetha.iyengar@dc.gov STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY S136 Birth Defects Research 111: S1-S180 (2019) Florida Florida Birth Defects Registry (FBDR) Purpose: Surveillance, Research, Educate health care professionals, women of childbearing age and general public about birth defects. Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators, Federal and state agencies Program status: Currently collecting data Start year: 1998 Earliest year of available data: 1998 Organizational location: Department of Health (Epidemiology/Environment), University Population covered annually: 225,018 in 2016 Statewide: Yes Current legislation or rule: Section 381.0031(1,2) F.S., allows for development of a list of reportable conditions. Birth defects were added to the list in July 1999. Legislation year enacted: 1999 Case Definition Outcomes covered: Major structural malformations and genetic disorders Pregnancy outcome: Livebirths (20 week gestation and greater) Age: Until age 1 Residence: Florida Surveillance Methods Case ascertainment: Passive case-finding with case confirmation, Florida has one Centers for Disease Control and Prevention (CDC) funded cooperative agreement which use active case ascertainment which is linked to the passive surveillance program. Vital records: Birth certificates, Death certificates,