State Birth Defects Surveillance Program Directory

Published 2004 Wiley-Liss, Inc.† Birth Defects Research (Part A) 70:609–676 (2004)

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY

Updated May 2004

Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

Acknowledgement: State birth defects program directors provided the information for this directory. Their names can be found under the “contact” section of each state proﬁle. Suggested reference: National Birth Defects Prevention Network (NBDPN). 2004. State Birth Defects Surveillance Program Directory. Birth Defects Research Part A . . .

†This article is a US government work and, as such, is in the public domain in the United States of America. Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/bdra.20071

Birth Defects Research (Part A): Clinical and Molecular Teratology 70:609–676 (2004) 610 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Alabama Alabama Birth Defects Surveillance And Prevention Program (ABDSPP)

Purpose: surveillance, research, prevention Conditions warranting a chart review beyond the Partner: university, hospital, child program, advocacy newborn period: facial dysmorphism or abnormal facies, Program status: Currently collecting data failure to thrive, developmental delay, CNS condition (ie Start year: 1995 seizure), GI condition (ie intestinal blockage), GU Earliest year of available data: 1998 condition (ie recurrent infections), cardiovascular Organizational location: University condition, all infant deaths (excluding prematurity), Population covered annually: 8,000/year for 1998-2000 childhood deaths between 1 and 2, ocular conditions, data; 18,000 for 2001 data; 19,231 for 2002 data auditory/hearing conditions, any infant with a codable Statewide: No: 1998-2000 data: Mobile and Baldwin defect counties; 2001 data: Autauga, Baldwin, Bullock, Clarke, Coding: California’s coding system based on BPA Coffee, Crenshaw, Dale, Elmore, Escambia, Geneva, Henry, Houston, Lowndes, Macon, Mobile, Monroe, Data Collected Montgomery, and Washington counties; 2002 data: add Barbour, Butler, Pike, and Russell counties to 2001 Infant/fetus: identification information (name, address, counties. date-of-birth, etc.), demographic information Current legislation or rule: none (race/ethnicity, sex, etc.), birth measurements (weight, gestation, Apgars, etc.), tests and procedures, infant complications, birth defect diagnostic information Case Definition Mother: identification information (name, address, date- Outcomes covered: major birth defects and genetic of-birth, etc.), demographic information (race/ethnicity, disorders sex, etc.), gravidity/parity, illnesses/conditions, prenatal Pregnancy outcome: live births (all gestational ages and care, prenatal diagnostic information, birth weights), fetal deaths—stillbirths, spontaneous pregnancy/delivery complications, family history abortions, etc. (less than 20 week gestation, 20 weeks Father: identification information (name, address, date- gestation and greater), elective terminations of-birth, etc.), demographic information (race/ethnicity, Age: up to one year after delivery sex, etc.), illnesses/conditions, family history Residence: 1998-2000 data: Mobile and Baldwin counties; 2001 data: Autauga, Baldwin, Bullock, Clarke, Coffee, Data Collection Methods and Storage Crenshaw, Dale, Elmore, Escambia, Geneva, Henry, Houston, Lowndes, Macon, Mobile, Monroe, Database storage/management: MS Access, Clipper Montgomery, and Washington counties; 2002 data: add Barbour, Butler, Pike, and Russell counties to 2001 Data Analysis counties. Data analysis software: SPSS, MS Access, Hypercube; Excel pivot tables Surveillance methods Quality assurance: re-abstraction of cases, double- Case ascertainment: active case ascertainment, checking of assigned codes, comparison/verification population-based between multiple data sources, clinical review, timeliness Case finding/identification sources: Data use and analysis: baseline rates, rates by Vital records: birth certificates, death certificates, fetal demographic and other variables, time trends, needs death certificates assessment, service delivery, referral, grant proposals, Delivery hospitals: disease index or discharge index, education/public awareness, prevention projects obstetrics logs (i.e., labor & delivery), regular nursery logs, ICU/NICU logs or charts, pediatric logs, Funding postmortem/pathology logs, Congenital Anomaly Funding source: CDC grant 80%, University 20% reporting form Pediatric & tertiary care hospitals: disease index or Other discharge index, ICU/NICU logs or charts, pediatric Web site: www.usouthal.edu/genetics/ logs, postmortem/pathology logs, Congenital Anomaly Additional information on file: Birth Defects Syndromes reporting form fact sheets Other specialty facilities: cytogenetic laboratories, Comments: Site linked to International Birth Defect genetic counseling/clinical genetic facilities Information Systems.

Case Ascertainment Contact(s) Conditions warranting chart review in newborn Wladimir Wertelecki, MD period: any chart with a ICD9-CM code 740-759, any Director chart with a selected list of ICD9-CM codes outside Alabama Birth Defects Surveillance and Prevention 740-759, any birth certiﬁcate with a birth defect box Program checked, Ͻ2500 Gms, all stillborn infants, all neonatal CCCB room 214, 307 University Boulevard deaths, all elective abortions, all infants in NICU or Mobile, AL 36688 special care nursery, all prenatal diagnosed or Phone: 251-460-7505; Fax: 251-461-1591 suspected cases, 5 minute apgar Ͻ7 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 611 Peg Hilliard, BSN Coordinator Alabama Birth Defects Surveillance and Prevention Program CCCB 214, 307 University Boulevard Mobile, AL 36688 Phone: 251-460-7692; Fax: 251-460-7684 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 612 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Alaska Alaska Birth Defects Registry (ABDR)

Purpose: surveillance Data Collected Partner: Department of Health, hospital, nursing, Infant/fetus: identification information (name, address, environment, child program date-of-birth, etc.), demographic information Program status: Currently collecting data (race/ethnicity, sex, etc.), birth measurements (weight, Start year: 1996 gestation, Apgars, etc.), birth defect diagnostic Earliest year of available data: 1996 information Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 10,000 Data Collection Methods and Storage Statewide: yes Database storage/management: MS Access Current legislation or rule: 7 AAC 27.012 Legislation year enacted: 1996 Data Analysis Data analysis software: Epi-Info, SPSS, SAS, MS Access, Case Definition Excel Outcomes covered: ICD-9 Codes 237.7, 243, 255.2, 277, Quality assurance: validity checks, re-abstraction of 279, 282, 284.0, 331, 334, 335, 343, 359, 362.74, 740-760, cases, comparison/verification between multiple data 760.71 sources, timeliness Pregnancy outcome: live births (all gestational ages and Data use and analysis: routine statistical monitoring, birth weights), fetal deaths—stillbirths, spontaneous baseline rates, rates by demographic and other variables, abortions, etc. (20 weeks gestation and greater) time trends, observed vs expected analyses, Age: Birth to age one; Birth to age six for alcohol related epidemiologic studies (using only program data), birth defects (including fetal alcohol syndrome) identification of potential cases for other epidemiologic Residence: Alaska residents studies, needs assessment, service delivery, grant proposals, education/public awareness, prevention Surveillance methods projects Case ascertainment: passive case ascertainment, population-based; active case ascertainment for alcohol System Integration related birth defects (including fetal alcohol syndrome) System links: final birth file Case finding/identification sources: System integration: The ABDR is in the process of Vital records: birth certificates, fetal death certificates developing a system to match birth defects data to data Other state based registries: programs for children housed in the Special Needs Services Unit (which with special needs, newborn biochemical screening administers programs such as Specialty Clinics, Infant program, Infant Learning Programs, Genetics Clinics, Learning Programs, and Genetics Clinics) to assist with Specialty Clinics (Heart, Cleft Lip/Palate, identifying gaps in services and referrals for children Neurodevelopmental), MIMR (FIMR), Public Health with birth defects. Nursing Delivery hospitals: Reports are generated by the health information management departments, within hospitals Funding and health care facilities, for any child treated or Funding source: CDC grant 100% diagnosed with a reportable ICD-9 code. Pediatric & tertiary care hospitals: Reports are Other generated by the health information management departments, within hospitals and health care facilities, Web site: http://www.akepi.org/mchepi/ABDR/ for any child treated or diagnosed with a reportable default.stm ICD-9 code. Surveillance reports on file: Family Health Datalines, Third party payers: Medicaid databases, Indian health ABDR Surveillance Updates, MCH Fact Sheets (ex: Folic services Acid Knowledge and Use in Alaska), Alaska Maternal Other specialty facilities: genetic counseling/clinical and Child Health Data Book 2003 genetic facilities Procedure manual available: yes Other sources: physician reports Additional information on file: Results of the Alaska Folic Acid Surveys conducted in 1999 and 2000 Case Ascertainment Conditions warranting chart review in newborn Contact(s) period: any chart with selected defects or medical Janine Schoellhorn, MS, MPH conditions ie abnormal facies, congenital heart disease, MCH Epidemiologist Any chart with an ICD-9 code of 760.71 or 742.1 and MCH EpidemiologyUnit ; Section of Epidemiology other birth defects as selected for review by the ABDR 3601 C Street, Suite 934 Program Manager. P.O. Box 240249 Conditions warranting a chart review beyond the Anchorage, AK 99524-0249 newborn period: all infant deaths (excluding prematurity) Phone: 907-269-3442; Fax: 907-269-3493 Coding: ICD-9-CM E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 613 Sharilyn Mumaw, BBA, BED ABDR Data Manager MCH Epidemiology Unit; Section of Epidemiology 3601 C Street, Suite 540 PO Box 240249 Anchorage, AK 99524-0249 Phone 907-269-3443; Fax 907-269-3493 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 614 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Arizona Arizona Birth Defects Monitoring Program (ABDMP)

Purpose: surveillance, service, prevention Case Ascertainment Partner: Department of Health, university, hospital, Conditions warranting chart review in newborn nursing, child program, advocacy period: any chart with a ICD9-CM code 740-759, any Program status: Currently collecting data chart with a selected list of ICD9-CM codes outside Start year: 1986 740-759, any chart with selected procedure codes, any Earliest year of available data: 1986 chart with selected defects or medical conditions ie Organizational location: Department of Health abnormal facies, congenital heart disease, any birth (Epidemiology/Environment), Bureau of Public Health certificate with a birth defect box checked, all stillborn Statistics/Office of Health Registries infants, all neonatal deaths, all prenatal diagnosed or Population covered annually: 90,783 in 2003 suspected cases Statewide: yes Conditions warranting a chart review beyond the Current legislation or rule: statute: ARS sec. 36-133. newborn period: any infant with a codable defect rule: Title 9, Chapter 4, Articles 1 and 5, Adopted Coding: CDC coding system based on BPA effective 1991. Legislation year enacted: 1988 Data Collected Infant/fetus: identification information (name, address, date-of-birth, etc.), demographic information Case Definition (race/ethnicity, sex, etc.), birth measurements (weight, Outcomes covered: 44 composite categories covering the gestation, Apgars, etc.), tests and procedures, birth defect major birth defects and genetic diseases, as defined by diagnostic information the BPA/MACDP codes Mother: identification information (name, address, date- Pregnancy outcome: live births (all gestational ages and of-birth, etc.), demographic information (race/ethnicity, birth weights), fetal deaths—stillbirths, spontaneous sex, etc.), gravidity/parity, illnesses/conditions, prenatal abortions, etc. (less than 20 week gestation, 20 weeks care, prenatal diagnostic information, gestation and greater; All gestational ages/birth weights pregnancy/delivery complications, family history included starting with 2002 data.), elective terminations Father: identification information (name, address, date- (20 weeks gestation and greater) of-birth, etc.), demographic information (race/ethnicity, Age: up to one year after delivery. If the nature of a sex, etc.), family history defect diagnosed in the first year of life is more precisely diagnosed later in the child’s life, and this information is Data Collection Methods and Storage contained in the chart at the time of our review (which Database storage/management: MS Access, Oracle occurs 2 -4 years after the child’s birth or fetal death), then the more precise diagnosis is used. Data Analysis Residence: in-state birth to state resident. Data analysis software: SAS, MS Access Quality assurance: validity checks, re-abstraction of cases, double-checking of assigned codes, comparison/ Surveillance methods verification between multiple data sources, data/hospital Case ascertainment: active case ascertainment, audits, timeliness population-based Data use and analysis: routine statistical monitoring, Case finding/identification sources: baseline rates, rates by demographic and other variables, Vital records: birth certificates, fetal death certificates time trends, grant proposals, education/public Other state based registries: programs for children with awareness, prevention projects special needs, newborn biochemical screening program, Cases are identified through Children Rehabilitation Funding Services Clinics and the Newborn Intensive Care Funding source: general state funds 25%, MCH funds 3%, Program, which are both in the Office for Children with genetic screening revenues 22%, CDC grant 50% Special Health Care Needs. Delivery hospitals: disease index or discharge index, Other discharge summaries, obstetrics logs (i.e., labor & Web site: www.hs.state.az.us/phs/phstats/bdr/ delivery), regular nursery logs, ICU/NICU logs or index.htm charts, pediatric logs, postmortem/pathology logs, Surveillance reports on file: Annual Reports, 1986 ultrasound reports, cytogenetic reports, stillborn logs, through 1997. mother’s charts for stillborns Procedure manual available: yes Pediatric & tertiary care hospitals: disease index or Additional information on file: procedures manual, copy discharge index, discharge summaries, ICU/NICU logs of legislation, case record form, case finding log, or charts, pediatric logs, postmortem/pathology logs, abstraction forms, quality assurance procedures. ultrasound reports, cytogenetic reports, stillborn logs, Comments: Contact person 3: Bichtram Nguyen, mother’s charts for still borns Epidemiologist, Arizona Department of Health Services, Other specialty facilities: prenatal diagnostic facilities 150 North 18th Avenue, Ste. 550, Phoenix, Arizona, (ultrasound, etc.), cytogenetic laboratories, genetic 85007; Phone: 602-364-1302; FAX: 602-542-7447; E-mail: counseling/clinical genetic facilities [email protected].

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 615 Contact(s) Timothy J. Flood, MD Medical Director, Arizona Department of Health Services 150 North 18th Ave., Ste. 550 Phoenix, AZ 85007 Phone: 602-542-7331; Fax: 602-364-0082 E-mail: tﬂ[email protected]

Allison K. Varga, RN Program Manager, ABDMP Arizona Department of Health Services 150 North 18th Ave., Ste. 550 Phoenix, AZ 85007 Phone: 602-542-7335; Fax: 602-542-7447 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 616 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Arkansas Arkansas Reproductive Health Monitoring System (ARHMS)

Purpose: surveillance, research, prevention Father: identification information (name, address, date- Partner: Department of Health, university, hospital, of-birth, etc.), demographic information (race/ethnicity, advocacy, legislator sex, etc.), family history Program status: Currently collecting data Start year: 1980 Data Collection Methods and Storage Earliest year of available data: 1980 Database storage/management: MS Access Organizational location: University, Arkansas Children’s Hospital Data Analysis Population covered annually: 37,000 Data analysis software: SAS, MS Access, STATA Statewide: yes Quality assurance: validity checks, re-abstraction of Current legislation or rule: Senate Bill Act 214 cases, double-checking of assigned codes, clinical review, Legislation year enacted: 1985 timeliness Data use and analysis: routine statistical monitoring, Case Definition baseline rates, rates by demographic and other variables, Outcomes covered: major structural birth defects monitoring outbreaks and cluster investigations, time Pregnancy outcome: live births (all gestational ages and trends, epidemiologic studies (using only program data), birth weights), fetal deaths—stillbirths, spontaneous identification of potential cases for other epidemiologic abortions, etc. (less than 20 week gestation, 20 weeks studies, grant proposals, education/public awareness, gestation and greater), elective terminations prevention projects Age: two years after delivery Residence: in and out of state births to state residents System Integration System links: final birth file Surveillance methods System integration: no Case ascertainment: active case ascertainment, population-based Funding Case finding/identification sources: Funding source: general state funds 100% Vital records: birth certificates Delivery hospitals: disease index or discharge index, Other discharge summaries, obstetrics logs (i.e., labor & Web site: www.ARbirthdefectsresearch.uams.edu delivery), regular nursery logs, ICU/NICU logs or Surveillance reports on file: Annual reports charts, pediatric logs Pediatric & tertiary care hospitals: disease index or Contact(s) discharge index, discharge summaries, ICU/NICU logs Bridget S. Mosley, MPH or charts, pediatric logs, postmortem/pathology logs, Epidemiologist specialty outpatient clinics Arkansas Center for Birth Defects Research and Other specialty facilities: prenatal diagnostic facilities Prevention (ultrasound, etc.), genetic counseling/clinical genetic 11219 Financial Center Parkway, facilities, maternal serum screening facilities Financial Park Place, Suite 250 Other sources: physician reports Little Rock, AR 72211 Phone: 501-364-8951; Fax: 501-364-5107 Case Ascertainment E-mail: [email protected] Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, any chart with Charlotte A. Hobbs, MD, PhD a selected list of ICD9-CM codes outside 740-759, any Associate Professor of Pediatrics chart with selected procedure codes, any birth certificate Section Chief, Birth Defects Research with a birth defect box checked, all stillborn infants, all UAMS College of Medicine elective abortions Arkansas Center for Birth Defects Research & Prevention Conditions warranting a chart review beyond the 11219 Financial Centre Parkway, Suite 250 newborn period: any infant with a codable defect Little Rock, AR 72211 Coding: CDC coding system based on BPA, Modified Phone: 501-364-5000; Fax: 501-364-5107 CDC and NBDPS coding system E-mail: [email protected] 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, birth defect diagnostic information Mother: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.), gravidity/parity, illnesses/conditions, prenatal diagnostic information, family history

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 617 California California Birth Defects Monitoring Program (CBDMP)

Purpose: surveillance, research congenital heart disease, all stillborn infants, all neonatal Partner: Department of Health, university deaths, all elective abortions, all prenatal diagnosed or Program status: Currently collecting data suspected cases, Apgar 0-0 Start year: 1983 Conditions warranting a chart review beyond the Earliest year of available data: 1983 newborn period: facial dysmorphism or abnormal facies, Organizational location: Occupational and cardiovascular condition, all infant deaths (excluding Environmental Disease Control, March of Dimes under prematurity), ocular conditions, any infant with a contract with the State Department of Health Services, codable defect Environmental and Occupational Disease Control. Coding: CDC coding system based on BPA Population covered annually: 60,000 Statewide: No: The Program currently monitors a Data Collected sampling of California births that are demographically similar to the state as a whole and whose birth defects Infant/fetus: identification information (name, rates and trends have been reflective of those throughout address, date-of-birth, etc.), demographic California. Furthermore, the Program has statutory information (race/ethnicity, sex, etc.), birth authority to conduct active surveillance anywhere in the measurements (weight, gestation, Apgars, etc.), tests state when warranted by environmental incidents or and procedures, infant complications, birth defect concerns. diagnostic information Current legislation or rule: Health and Safety Code, Mother: identification information (name, address, date- Division 102, Part 2, Chapter 1, Sections 103825-103855, of-birth, etc.), demographic information (race/ethnicity, effective 1982, recodified 1996. sex, etc.), gravidity/parity, illnesses/conditions, family Legislation year enacted: 1982 history Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, Case Definition sex, etc.), family history Outcomes covered: Serious structural birth defects, Data Collection Methods and Storage primarily encompassed within ICD codes 740-759. Database storage/management: Pregnancy outcome: live births (all gestational ages and FoxPro birth weights), fetal deaths—stillbirths, spontaneous abortions, etc. (less than 20 week gestation, 20 weeks Data Analysis gestation and greater), elective terminations (20 weeks Data analysis software: SAS gestation and greater) Quality assurance: validity checks, re-abstraction Age: one year of cases, double-checking of assigned codes, Residence: In-state births to residents of 1 of 8 counties. comparison/verification between multiple data Does not include births in military hospitals. sources, clinical review, Validity checks are done on all abstracts. Data use and analysis: routine statistical monitoring, Surveillance methods baseline rates, rates by demographic and other variables, Case ascertainment: Active case ascertainment, monitoring outbreaks and cluster investigations, time population-based trends, observed vs expected analyses, epidemiologic Case finding/identification sources: studies (using only program data), identification of Delivery hospitals: disease index or discharge index, potential cases for other epidemiologic studies, needs discharge summaries, obstetrics logs (i.e., labor & assessment, service delivery, grant proposals, education/ delivery), regular nursery logs, ICU/NICU logs or public awareness charts, pediatric logs, postmortem/pathology logs, surgery logs System Integration Pediatric & tertiary care hospitals: disease index or System links: final birth file discharge index, discharge summaries, ICU/NICU logs or charts, pediatric logs, postmortem/pathology logs, Funding surgery logs, laboratory logs Funding source: general state funds 34%, MCH funds Other specialty facilities: prenatal diagnostic facilities 20%, CDC grant 20%, other federal funding 16%, DHS/ (ultrasound, etc.), cytogenetic laboratories, genetic UC Pass through 10% counseling/clinical genetic facilities, maternal serum screening facilities Other Web site: www.cbdmp.org Case Ascertainment Surveillance reports on file: Current data on web site. Conditions warranting chart review in newborn period: Procedure manual available: yes any chart with a ICD9-CM code 740-759, any chart with Additional information on file: Publications Index, a selected list of ICD9-CM codes outside 740-759, any summaries of research findings, Collaboration Protocol, chart with selected procedure codes, any chart with Confidentiality Procedures, Cluster Investigation selected defects or medical conditions ie abnormal facies, Protocol, statutes, video.

Birth Defects Research (Part A) 70:609–676 (2004) 618 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Contact(s) Mary Jo Campodonica Data Director California Birth Defects Monitoring Program 1917 Fifth Street Berkeley, CA 94710-1916 Phone: 209-384-8388; Fax: 510-549-4175 E-mail: [email protected]

Gary M. Shaw, DrPH, MPH Research Director/Senior Epidemiologist California Birth Defects Monitoring Program 1917 Fifth Street Berkeley, CA 94710-1916 Phone: 510-549-4155; Fax: 510-549-4175 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 619 Colorado Colorado Responds To Children With Special Needs: Colorado (CRCSN)

Purpose: surveillance, service, prevention Data Collected Partner: Department of Health, university, environment, Infant/fetus: identification information (name, address, child program, advocacy date-of-birth, etc.), demographic information Program status: Currently collecting data (race/ethnicity, sex, etc.), birth measurements (weight, Start year: 1988 gestation, Apgars, etc.), birth defect diagnostic Earliest year of available data: 1989 information Organizational location: Department of Health Mother: identification information (name, address, date- (Epidemiology/Environment) of-birth, etc.), demographic information (race/ethnicity, Population covered annually: 68,420 (2002) sex, etc.), gravidity/parity, illnesses/conditions, prenatal Statewide: yes care, pregnancy/delivery complications Current legislation or rule: Colorado Revised Statutes Father: identification information (name, address, date- (CRS) 25-1.5-101 – 25-1.5-105 of-birth, etc.), demographic information (race/ethnicity, Legislation year enacted: 1985 sex, etc.)

Case Definition Data Collection Methods and Storage Outcomes covered: Structural birth defects, genetic and Database storage/management: MS Access selected metabolic conditions; selected developmental disabilities; very low birth weight (less than 1500 grams); Data Analysis others with medical and maternal risk factors for Data analysis software: SAS, ArcView (GIS software), developmental delay Maptitude Pregnancy outcome: live births (all gestational ages and Quality assurance: validity checks, birth weights), fetal deaths—stillbirths, spontaneous comparison/verification between multiple data abortions, etc. (20 weeks gestation and greater, any sources, timeliness, data audits performed for gestational age, selected diagnoses made prenatally are problematic conditions; clinical review performed ascertained) when necessary Age: up to the 3rd birthday (up to the 7th birthday for Data use and analysis: routine statistical monitoring, fetal alcohol syndrome) baseline rates, rates by demographic and other Residence: events occurring in-state or out-of-state to variables, monitoring outbreaks and cluster Colorado residents investigations, time trends, time-space cluster analyses, capture-recapture analyses, observed vs expected Surveillance methods analyses, epidemiologic studies (using only program Case ascertainment: Passive, population-based, multiple data), identification of potential cases for other sources; active for selected data sources, and for special epidemiologic studies, needs assessment, referral, projects like fetal alcohol syndrome grant proposals, education/public awareness, Case finding/identification sources: prevention projects, environmental studies Vital records: birth certificates, death certificates, fetal death certificates Other state based registries: newborn hearing System Integration screening program, newborn biochemical screening System links: final birth file, Newborn Hearing Screening program and Newborn Genetic Screening Delivery hospitals: disease index or discharge index, postmortem/pathology logs, selected postmortem Funding pathology sites Funding source: general state funds 15%, MCH funds Pediatric & tertiary care hospitals: disease index or 15%, CDC grant 60%, other federal funding 10% discharge index, postmortem/pathology logs, specialty outpatient clinics, selected postmortem pathology sites Other Third party payers: Medicaid databases Web site: http://www.cdphe.state.co.us/dc/crcsn/ Other specialty facilities: prenatal diagnostic facilities crcsnhome.asp (ultrasound, etc.), cytogenetic laboratories, genetic Procedure manual available: yes counseling/clinical genetic facilities Additional information on file: CRCSN Reference Guide; Other sources: physician reports CRCSN Community Notification and Referral Program Site Manual; Fact sheets (available on web site) Case Ascertainment Conditions warranting chart review in newborn period: Contact(s) prenatal to age 3: 18 selected conditions for CUSUM Margaret Schonbeck, BS, MSPH(c) statistical trends monitoring, selected death and fetal Program Manager deaths, and fetal alcohol syndrome; plus all active case CRCSN ascertainment data sources (postmortem pathology and 4300 Cherry Creek Drive specialty clinics. Denver, CO 80246-1530 Coding: ICD-9-CM, Extended code utilized to describe Phone: 303-692-2636; Fax: 303-782-0904 syndromes and further specify condition E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 620 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Lisa Ann Miller, MD, MSPH Medical Director Colorado Responds to Children with Special Needs 4300 Cherry Creek Dr Denver, CO 80246-1530 Phone: 303-692-2663; Fax: 303-782-0904 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 621 Connecticut Connecticut Birth Defects Registry (CTBDR)

Purpose: surveillance, service, prevention, Reporting for karyotype, and a 10% random sample, stratified on birth MCH Block Grant hospital, of all obvious birth defects that were not Partner: hospital, child program, advocacy reported from birth admission but documented from Program status: Currently collecting data pediatric reports or in the CHIME database. Start year: 2002 Coding: ICD-9-CM Earliest year of available data: to be determined Organizational location: Department of Public Health Data Collected (Maternal and Child Health) Infant/fetus: identification information (name, address, Population covered annually: 45,000 date-of-birth, etc.), demographic information Statewide: yes (race/ethnicity, sex, etc.), birth measurements (weight, Current legislation or rule: Sec. 19a-56a. (Formerly Sec. gestation, Apgars, etc.), birth defect diagnostic information 10a-132b). Birth defects surveillance program.; Sec. 19a- Mother: identification information (name, address, date- 54. (Formerly Sec. 19-21a). Registration of physically of-birth, etc.), demographic information (race/ethnicity, handicapped children. Sec. 19a-53. (Formerly Sec. 19-21). sex, etc.), gravidity/parity, prenatal care, pregnancy/ Reports of physical defects of children. delivery complications Legislation year enacted: Sec. 10a-132b: 1991; Sec. 19-21a: Father: identification information (name, address, date-of- 1949 Sec. 19-21: 1949. birth, etc.), demographic information (race/ethnicity, sex, etc.)

Case Definition Data Collection Methods and Storage Outcomes covered: All major structural birth defects; Database storage/management: MS Access, Oracle biochemical, genetic and hearing impairment through Data Analysis linkage with Newborn Screening System; any condition Data analysis software: SAS, MS Access which places a child at risk for needing specialized Quality assurance: validity checks, medical care (i.e., complications of prematurity, cancer, comparison/verification between multiple data sources, trauma, etc.) ICD-9 codes 740 thru 759.9 and 760.71 data/hospital audits, clinical review, timeliness Pregnancy outcome: live births (all gestational ages and Data use and analysis: routine statistical monitoring, birth weights, PDA GE to 2500 gms birth weight) baseline rates, rates by demographic and other variables, Age: up to one year after delivery for birth defects monitoring outbreaks and cluster investigations, time Residence: in and out of state births to state residents trends, needs assessment, service delivery, referral, grant proposals, education/public awareness, prevention Surveillance methods projects, provider education Case ascertainment: Passive, population-based Case finding/identification sources: System Integration Vital records: birth certificates, death certificates, System links: final birth file matched birth/death file, inpatient hospitalizations, ambulatory surgery and emergency room visits Funding Other state based registries: programs for children with Funding source: MCH funds 100% special needs, newborn hearing screening program, newborn biochemical screening program Other Delivery hospitals: disease index or discharge index, Web site: none reports from health care professionals in newborn Surveillance reports on file: none nurseries and NICUs. Procedure manual available: yes Pediatric & tertiary care hospitals: disease index or discharge Additional information on file: none index, reports from health care professionals in pediatric inpatient and outpatient services planned for future. Contact(s) Midwifery facilities: Yes Martha Okafor Other sources: physician reports, mandatory reporting by Division Director health care providers and facilities; CSHCN Programs; Family Health Division Newborn Screening System (for genetic disorders and 410 Capitol Ave. MS #11FHD hearing impairment). Hartford, CT 06134 Phone: 860-509-8066; Fax: 860-509-7720 Case Ascertainment E-mail: [email protected] Conditions warranting chart review in newborn period: any chart with selected defects or medical conditions ie Chunfu Liu, MSc, MPH abnormal facies, congenital heart disease, any birth Epidemiologist III certificate with a birth defect box checked, cases from Connecticut Department of Public Health, Family Health birth admissions where the reporting form is the sole Division source of case ascertainment; cases of multiple anomalies 410 Capitol Avenue, MS #11MAT without a specified syndrome; cases where diagnoses are Hartford, CT 06134 qualified as ’preliminary’ or ’rule-out’;all cases of Phone: 860-509-7765; Fax: 860-509-7720 chromosomal anomalies lacking confirmation by E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 622 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Delaware Delaware Birth Defects Surveillance Project

Purpose: surveillance, prevention System Integration Partner: hospital, child program System links: Link to Newborn Screening Program status: Currently collecting data System integration: Initial check into Newborn Screening Organizational location: Department of Health and records with a link which pulls info to Birth Defects Social Services, Division of Public Health, Community Registry from Newborn Screening system. Health Care Access Population covered annually: 11,046 Other Statewide: yes Web site: None at present time Current legislation or rule: House Bill No. 197, an act to amend Title 16 of the Delaware Code relating to Birth Defects Contact(s) Legislation year enacted: 1997 JoAnn Baker, MSN, FNP Director, Family Planning Program Case Definition DE Division of Public Health Outcomes covered: Birth Defects Registry - All birth P. O. Box 637 defects for passive surveillance, selected birth defects for Dover, DE 19903 active surveillance, developmental disabilities if due to a Phone: (302) 744-4554; Fax: (302) 739-6653 birth defect, selected metabolic defects, genetic diseases, E-mail: [email protected] infant mortality, congenital infections Pregnancy outcome: live births (all gestational ages and Betsy Voss birth weights), fetal deaths—stillbirths, spontaneous Coordinator, Birth Defects and Newborn Screening abortions, etc. (greater than 20 weeks) DE Division of Public Health Age: Birth to 5 years P.O. Box 637 Residence: In-state and out-of-state birth to state resident, Dover, DE 19903 and in-state birth to state non-resident. Phone: (302) 744-4909; Fax: (302) 739-6653 E-mail: [email protected] Surveillance methods Case ascertainment: Active and passive surveillance, population-based, Hospital discharge records/data Case finding/identification sources: Vital records: birth certificates, death certificates, Hospital discharge records/data Other state based registries: programs for children with special needs, newborn hearing screening program, newborn biochemical screening program, cancer registry, AIDS/HIV registry Delivery hospitals: disease index or discharge index Pediatric & tertiary care hospitals: disease index or discharge index

Case Ascertainment Coding: ICD-9-CM, six-digit modiﬁed BPA/ICD-9 codes

Data Collected Infant/fetus: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), birth measurements (weight, gestation, Apgars, etc.), infant complications Mother: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.), gravidity/parity, prenatal care, pregnancy/ delivery complications Father: identification information (name, address, date-of- birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Database storage/management: electronic birth certiﬁcate

Data Analysis

Data use and analysis: baseline rates, time trends, time- space cluster analyses, observed vs expected analyses, needs assessment

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 623 District of Columbia District Of Columbia Birth Defects Surveillance And Prevention Program (DC BDSPP)

Purpose: surveillance, research, service, prevention Data Collected Partner: Department of Health, university, hospital, child Infant/fetus: identification information (name, address, program, advocacy date-of-birth, etc.), demographic information Program status: Currently collecting data (race/ethnicity, sex, etc.), birth measurements (weight, Start year: 603 gestation, Apgars, etc.), tests and procedures, infant Earliest year of available data: 2003 complications, birth defect diagnostic information Organizational location: Department of Health Mother: identification information (name, address, date- (Maternal and Child Health) of-birth, etc.), demographic information (race/ethnicity, Population covered annually: 15000 (approximately half sex, etc.), gravidity/parity, illnesses/conditions, prenatal are to District residents) care, prenatal diagnostic information, Statewide: yes pregnancy/delivery complications, family history Father: identification information (name, address, date- Case Definition of-birth, etc.), demographic information (race/ethnicity, Outcomes covered: major birth defects and genetic sex, etc.), illnesses/conditions, family history disorders. Pregnancy outcome: live births (all gestational ages Data Collection Methods and Storage and birth weights), fetal deaths—stillbirths, Database storage/management: Oracle spontaneous abortions, etc. (20 weeks gestation and greater, Ͼ500gm) Data Analysis Age: Up to one year after birth except in the case of Fetal Data analysis software: Epi-Info, SPSS, SAS Alcohol Syndrome which is up to six years. Quality assurance: validity checks, re-abstraction of Residence: State resident at the time of diagnosis cases, double-checking of assigned codes, comparison/ verification between multiple data sources, data/hospital Surveillance methods audits, clinical review, timeliness Case ascertainment: combination of active and passive, Data use and analysis: routine statistical monitoring, population-based baseline rates, rates by demographic and other variables, Case finding/identification sources: monitoring outbreaks and cluster investigations, time Vital records: birth certificates, death certificates, trends, time-space cluster analyses, observed vs expected matched birth/death file, fetal death certificates analyses, epidemiologic studies (using only program Other state based registries: programs for children with data), needs assessment, service delivery, referral, grant special needs, newborn hearing screening program, proposals, education/public awareness, prevention newborn biochemical screening program projects Delivery hospitals: disease index or discharge index, discharge summaries, obstetrics logs (i.e., labor & System Integration delivery), regular nursery logs, ICU/NICU logs or System links: state registry, final birth file charts, pediatric logs Pediatric & tertiary care hospitals: discharge Funding summaries, ICU/NICU logs or charts, specialty Funding source: MCH funds 15%, CDC grant 80% outpatient clinics Third party payers: Medicaid databases Contact(s) Other specialty facilities: prenatal diagnostic facilities Deneen Long-White (ultrasound, etc.), genetic counseling/clinical genetic Chief, Data Collection and Analysis Division facilities, maternal serum screening facilities DC Department of Health, Maternal and Family Health Other sources: physician reports Administration 825 N. Capitol Street, NE, Room 3181 Washington, DC 20002 Case Ascertainment Phone: (202) 442-9343; Fax: (202) 442-4828 Conditions warranting chart review in newborn period: E-mail: [email protected] any chart with selected defects or medical conditions ie abnormal facies, congenital heart disease, any birth Joyce Brooks, MSW, LICSW certificate with a birth defect box checked, all stillborn Chief, Children With Special Health Care Needs Division infants, all neonatal deaths, all infants in NICU or special DC Department of Health, Maternal and Family Health care nursery, all prenatal diagnosed or suspected cases, Administration ICD9-CM 740-741.9, 742.3, 743.1, 744-748.5, 749- 825 North Capitol Street, NE Room 3106 749.25,750-751.6, 758-758.2, 760.71, 389, 243, 270.1, 270.3, Washington, DC 20002 271.1, 282.2, 282.4-.63, 282.69, 282.7 Phone: (202)727-7540; Fax: (202)727-7789 Conditions warranting a chart review beyond the E-mail: [email protected] newborn period: facial dysmorphism or abnormal facies, developmental delay, all infant deaths (excluding prematurity), auditory/hearing conditions, any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM

Birth Defects Research (Part A) 70:609–676 (2004) 624 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Florida Florida Birth Defects Registry (FBDR)

Purpose: surveillance, research, service, prevention, gestation, Apgars, etc.), tests and procedures, infant Educate health care professionals complications, birth defect diagnostic information Partner: Department of Health, university, hospital, Mother: identification information (name, address, date- environment, child program, advocacy, legislator, federal of-birth, etc.), demographic information (race/ethnicity, and state agencies sex, etc.), gravidity/parity, illnesses/conditions, prenatal Program status: Currently collecting data care, prenatal diagnostic information, Start year: 1998 pregnancy/delivery complications, family history Earliest year of available data: 1996 Father: identification information (name, address, date- Organizational location: Department of Health of-birth, etc.), demographic information (race/ethnicity, (Epidemiology/Environment), Florida Department of sex, etc.), illnesses/conditions, family history Health, Bureau of Community Environmental Health, University Data Collection Methods and Storage Population covered annually: 205,580 in 2002 Database storage/management: MS Access, Excel Statewide: yes Current legislation or rule: Section 381.0031(1,2) F.S., Data Analysis allows for development of a list of reportable conditions. Data analysis software: SPSS, SAS, MS Access, Excel Birth defects were added to the list in July 1999. Quality assurance: validity checks, double-checking of assigned codes, comparison/verification between Case Definition multiple data sources, clinical review, timeliness Outcomes covered: Major structural malformations and Data use and analysis: routine statistical monitoring, selected genetic disorders baseline rates, rates by demographic and other variables, Pregnancy outcome: live births, fetal deaths—stillbirths, monitoring outbreaks and cluster investigations, time spontaneous abortions, etc. (20 weeks gestation and trends, observed vs expected analyses, epidemiologic greater) studies (using only program data), identification of Age: until age 1 potential cases for other epidemiologic studies, needs Residence: Florida assessment, grant proposals, education/public awareness, prevention projects Surveillance methods System Integration Case ascertainment: Population-based, passive case ascertainment System links: state registry Case finding/identification sources: Funding Vital records: birth certificates, matched birth/death file, fetal death certificates Funding source: general state funds 70%, CDC grant 30% Other state based registries: programs for children with Other special needs, newborn hearing screening program, newborn biochemical screening program, cancer registry Web site: http://flbdr.hsc.usf.edu Delivery hospitals: disease index or discharge index, Surveillance reports on file: 1996 Annual Report, Neural discharge summaries, obstetrics logs (i.e., labor & Tube Defects Report, Data Quality Assurance Report, delivery), regular nursery logs, ICU/NICU logs or charts Active Surveillance Report, Website Pediatric & tertiary care hospitals: disease index or Procedure manual available: yes discharge index, discharge summaries, ICU/NICU logs Additional information on file: Grants, progress reports, or charts, pediatric logs educational and health promotion materials, and video Third party payers: Medicaid databases, health tapes maintenance organizations (HMOs) Contact(s) Other sources: physician reports Jane A. Correia, BS Environmental Specialist III Case Ascertainment Florida Department of Health Conditions warranting chart review in newborn period: 4052 Bald Cypress Way, Bin A08 any chart with selected procedure codes, any chart with Tallahassee, FL 32399-1712 selected defects or medical conditions ie abnormal facies, Phone: 850-245-4444, ext. 2198; Fax: 850-922-8473 congenital heart disease E-mail: [email protected].fl.us Conditions warranting a chart review beyond the newborn period: facial dysmorphism or abnormal facies, Eric Grimm, MPA CNS condition (ie seizure), GI condition (ie intestinal Burea Chief blockage), auditory/hearing conditions Florida Department of Health Coding: CDC coding system based on BPA, ICD-9-CM 4052 Bald Cypress Way, Bin A08 Tallahassee, FL 32399-1712 Data Collected Phone: 850-245-4115; Fax: 850-922-8473 Infant/fetus: identification information (name, address, E-mail: [email protected].fl.us date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), birth measurements (weight,

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 625 Geogia Centers for Disesase Control and Prevention, Metropolitan Atlanta Congenital Defects Program (MACDP)

Purpose: surveillance, research, service Data Collected Partner: university, hospital Infant/fetus: identification information (name, address, Program status: Currently collecting data date-of-birth, etc.), demographic information Start year: 1967 (race/ethnicity, sex, etc.), birth measurements (weight, Earliest year of available data: 1968 gestation, Apgars, etc.), tests and procedures, infant Organizational location: CDC, National Center on Birth complications, birth defect diagnostic information Defects and Developmental Disabilities Mother: identification information (name, address, date- Population covered annually: 50746 of-birth, etc.), demographic information (race/ethnicity, Statewide: No: Births to mothers residing within one of sex, etc.), gravidity/parity, illnesses/conditions, prenatal five counties in the metropolitan Atlanta area of the state diagnostic information, pregnancy/delivery of Georgia complications, family history Current legislation or rule: State Laws Official Georgia Father: identification information (name, address, date- Code Annotated (OCGA) 31-12-2 of-birth, etc.), demographic information (race/ethnicity, sex, etc.), illnesses/conditions, family history Case Definition Data Collection Methods and Storage Outcomes covered: Major structural or genetic birth defects Database storage/management: Epi-Info, Mainframe Ͼϭ Pregnancy outcome: live births ( 20 weeks), fetal Data Analysis deaths—stillbirths, spontaneous abortions, etc. (20 weeks Data analysis software: SPSS, SAS, MS Access gestation and greater), elective terminations (less than 20 Quality assurance: validity checks, double-checking of week gestation, 20 weeks gestation and greater) assigned codes, data/hospital audits, clinical review, Age: Before 6 years of age timeliness Residence: Births to mothers residing in one of five Data use and analysis: routine statistical monitoring, metropolitan Atlanta counties baseline rates, rates by demographic and other variables, Surveillance methods monitoring outbreaks and cluster investigations, time trends, observed vs expected analyses, epidemiologic Case ascertainment: Active case ascertainment; studies (using only program data), identification of population-based; Combination of active and passive potential cases for other epidemiologic studies, service case ascertainment for cases ascertained only at perinatal delivery, prevention projects offices. Case finding/identification sources: System Integration Vital records: birth certificates, fetal death certificates System links: state registry, final birth file Delivery hospitals: disease index or discharge index, discharge summaries, obstetrics logs (i.e., labor & Funding delivery), regular nursery logs, ICU/NICU logs or Funding source: other federal funding 100% charts, pediatric logs, postmortem/ pathology logs, Induction logs and miscarriage logs Other Pediatric & tertiary care hospitals: disease index or Web site: www.cdc.gov/ncbddd/bd discharge index, discharge summaries Surveillance reports on file: numerous reports and Other specialty facilities: prenatal diagnostic facilities bibliography (ultrasound, etc.), cytogenetic laboratories Procedure manual available: yes Additional information on file: rate tables by defect by year Case Ascertainment Comments: For surveillance reports and other information Conditions warranting chart review in newborn period: regarding the MACDP, e-mail [email protected]. any chart with a ICD9-CM code 740-759, any chart with a selected list of ICD9-CM codes outside 740-759, any Contact(s) chart with a CDC/BPA code, any chart with selected Leslie A. O’Leary, PhD defects or medical conditions ie abnormal facies, Managing Director, MACDP congenital heart disease, any birth certificate with a birth Centers for Disease Control and Prevention defect box checked, birth weight Ͻ 2500 grams or Ͻ36 1600 Clifton Rd., MS E-86 weeks gestation, all stillborn infants, all neonatal deaths, Atlanta, GA 30333 all elective abortions, all infants with low APGAR scores, Phone: 404-498-3808; Fax: 404-498-3040 all infants in NICU or special care nursery, all prenatal E-mail: [email protected] diagnosed or suspected cases Conditions warranting a chart review beyond the Janet D. Cragan, MD newborn period: facial dysmorphism or abnormal facies, Medical Director, MACDP failure to thrive, CNS condition (ie seizure), GI condition Centers for Disease Control and Prevention (ie intestinal blockage), cardiovascular condition, ocular 1600 Clifton Rd., MS E-86 conditions, auditory/hearing conditions, any infant with Atlanta, GA 30333 a codable defect Phone: 404-498-3807; Fax: 404-498-3040 Coding: CDC coding system based on BPA E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 626 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Georgia Georgia Birth Defects Reporting And Information System (GBDRIS)

Purpose: surveillance, research, service, prevention Data Collection Methods and Storage Partner: Department of Health, university, hospital, Database storage/management: MS Access advocacy Program status: Currently collecting data Data Analysis Start year: 2003 Data analysis software: SAS, MS Access Earliest year of available data: 2003 Quality assurance: validity checks, re-abstraction of Organizational location: Department of Health cases, double-checking of assigned codes, comparison/ (Epidemiology/Environment) verification between multiple data sources, data/hospital Population covered annually: 133,000 audits, clinical review, timeliness Statewide: yes Data use and analysis: routine statistical monitoring, Current legislation or rule: Birth defects are reportable baseline rates, rates by demographic and other variables, under State Laws Official Code of Georgia Annotated epidemiologic studies (using only program data), service (OCGA) 31-12-2 and 31-1-3.2 which mandate the delivery, grant proposals, education/public awareness reporting of notifiable diseases and newborn hearing screening, and Chapters 290-5-3-.02 and 290-5-24 of the System Integration Rules of Department System links: state registry, final birth file Legislation year enacted: Updated in 2003 System integration: Newborn Surveillance and Tracking System (NSTS) is under development. Will integrate Case Definition multiple children health systems including birth defects, Outcomes covered: Major birth defects,genetic diseases, UNHS, NBS and Children 1st. FAS and CP Pregnancy outcome: live births (all gestational ages and Funding birth weights), fetal deaths—stillbirths, spontaneous Funding source: general state funds 60%, other federal abortions, etc. (less than 20 week gestation, 20 weeks funding 40% gestation and greater), elective terminations Age: Up to 6 years of age Other Residence: In and out of state births to state residents Web site: http://health.state.ga.us/epi/mch/ publications.shtml Surveillance methods Procedure manual available: yes Case ascertainment: passive Case finding/identification sources: Contact(s) Vital records: birth certificates, death certificates, Debra L. Hersh, MPH matched birth/death file, fetal death certificates GBDRIS Coordinator Other state based registries: programs for children with GA Division of Public Health, MCH Epidemiology special needs, newborn hearing screening program, Section newborn biochemical screening program 2 Peachtree St., NW Suite 14-404 Delivery hospitals: disease index or discharge index, Atlanta, GA 30303 discharge summaries Phone: 404-651-5131; Fax: 404-657-7517 Pediatric & tertiary care hospitals: disease index or E-mail: [email protected] discharge index, discharge summaries Third party payers: Medicaid databases Hema Joshi, M Med Sci Other specialty facilities: prenatal diagnostic facilities Assistant Coordinator (ultrasound, etc.), cytogenetic laboratories, genetic GA Division of Publit Health, MCH Epidemiology counseling/clinical genetic facilities, maternal serum Section screening facilities 2 Peachtree St, NW Suite 14-405 Other sources: physician reports Atlanta, GA 30303 Phone: 404-463-0906; Fax: 404-657-7517 E-mail: [email protected] Case Ascertainment Conditions warranting chart review in newborn period: any chart with selected defects or medical conditions ie abnormal facies, congenital heart disease Coding: ICD-9-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.), birth defect diagnostic information Mother: identiﬁcation information (name, address, date-of- birth, etc.), demographic information (race/ethnicity, sex, etc.)

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 627 Hawaii Hawaii Birth Defects Program (HBDP)

Purpose: surveillance, research, service, prevention speciﬁc logs, laboratories, clinics, etc. are usually found Partner: Department of Health, university, hospital, in the medical record when doing chart review. nursing, environment, child program, advocacy, Other specialty facilities: prenatal diagnostic legislator (ultrasound, etc.), cytogenetic laboratories, genetic Program status: Currently collecting data counseling/clinical genetics Start year: 1988 Earliest year of available data: 1986 Case Ascertainment Organizational location: DOH/Children With Special Conditions warranting chart review in newborn period: Health Needs Branch, Research Corporation of the any chart with a ICD9-CM code 740-759, any chart with University of Hawaii a selected list of ICD9-CM codes outside 740-759, any ϳ Population covered annually: 19,906 average over 16 chart with a CDC/BPA code, all stillborn infants, all years neonatal deaths, all prenatal diagnosed or suspected Statewide: yes cases. Medical terminations and spontaneous abortions Current legislation or rule: 8/15/1988 to 6/30/2002 - where fetus was diagnosed with a birth defect and Hawaii Revised Statutes (HRS), Sections 321-31 and 338- parents elected not to bring baby to term or mother 2 in conjunction per Executive Chamber ruling by spontaneously aborted. Governor on 6/16/1989. HRS Sections 324-1 and 324-2 Conditions warranting a chart review beyond the for additional legislative authority (1990 Amendments). newborn period: all infant deaths (excluding 7/1/02 to Present - Act 252 (2002) - Relating to Birth prematurity), childhood deaths between 1 and 6, any Defects (SB 2763, SD 2, HD 2, CD 1) infant with a codable defect Legislation year enacted: 1989, 1990 and 2002 Coding: CDC coding system based on BPA, ICD-9-CM

Case Definition Data Collected Outcomes covered: All ϳ1,154ϩ recommended by CDC Infant/fetus: identification information (name, address, in their May 1987 Birth Defects Branch Six Digit Code date-of-birth, etc.), demographic information for Reportable Congenital Anomalies, based on B.P.A. (race/ethnicity, sex, etc.), birth measurements (weight, Classification of Diseases (1979) and WHO ICD-9-CM gestation, Apgars, etc.), tests and procedures, infant (1977). complications, birth defect diagnostic information Pregnancy outcome: live births (all gestational ages and Mother: identification information (name, address, date- birth weights), fetal deaths—stillbirths, spontaneous of-birth, etc.), demographic information (race/ethnicity, abortions, etc. (less than 20 week gestation, 20 weeks sex, etc.), gravidity/parity, illnesses/conditions, prenatal gestation and greater), elective terminations (Data care, prenatal diagnostic information, collected on all elective medical terminations that were pregnancy/delivery complications, family history, carried out because a screening test or diagnositc mataernal risk factors procedure documented that the fetus was severely Father: identification information (name, address, date- impaired with a birth defect and the parents elected not of-birth, etc.), demographic information (race/ethnicity, to bring the baby to term.) sex, etc.), illnesses/conditions, family history Age: Up to one year after delivery Data Collection Methods and Storage Residence: All in-state Hawaii births (resident and nonresident) Database storage/management: MS Access Data Analysis Surveillance methods Data analysis software: MS Access Case ascertainment: Active case ascertainment, Quality assurance: validity checks, re-abstraction of population-based cases, double-checking of assigned codes, comparison/ Case finding/identification sources: verification between multiple data sources, clinical Vital records: Vital records are used to supplement review, timeliness information collected from other data sources but are not Data use and analysis: routine statistical monitoring, used to primarily identify potential cases. Vital records public health program evaluation, baseline rates, rates by data are also used as denominators for determining birth demographic and other variables, monitoring outbreaks defects rates per 10,000 births. and cluster investigations, time trends, epidemiologic Other state based registries: The HBDP supplies studies (using only program data), identification of aggregate, de-identified data to the entities listed; they potential cases for other epidemiologic studies, needs do not supply data to the HBDP. assessment, grant proposals, education/public Delivery hospitals: disease index or discharge index, awareness, prevention projects, publication of articles in discharge summaries, postmortem/pathology logs. Note: peer reviewed professional journals. Information from specific logs, laboratories, clinics, etc. are usually found in the medical record when doing System Integration chart review. System links: Although not initiated yet, the HBDP is in Pediatric & tertiary care hospitals: disease index or the planing stages of embarking on a GIS statistical discharge index, discharge summaries. Information from mapping project.

Birth Defects Research (Part A) 70:609–676 (2004) 628 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Funding Funding source: general state funds 63%, CDC grant 28%, other federal funding 5%, private foundations 4%

Other Web site: http://members.aol.com/entropynot/ hbdp.html Surveillance reports on ﬁle: Eleven (11) Hawaii Birth Defects Program Statewide Surveillance Data Reports - 1) ϭ 1989-1991, 2) ϭ 1988-1993, 3) ϭ 1988-1994, 4) ϭ 1988-1995, 5) ϭ 1987-1996, 6) ϭ 1986-1997, 7) ϭ 1986- 1998, 8) ϭ 1986-1999, 9) ϭ 1986-2000, and 10) ϭ1986- 2001, and 11) 1986-2002 Procedure manual available: yes Additional information on ﬁle: HBDP informational brochure; copies of legislation; original and revised abstraction forms; abstraction manual; annual reports; HBDP data; quality assurance reports (completeness, accuracy, timeliness); special study reports (6).

Contact(s) Ruth D. Merz, MS, Administrator Hawaii Birth Defects Program 76 North King Street, #208 Honolulu, HI 96817-5157 Phone: 808-587-4120; Fax: 808-587-4130 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 629 Idaho

Program status: No surveillance program

Contact(s) Russell A. Duke Chief, Bureau of Clincal and Preventive Services Idaho Dept of Health and Welfare 450 W. State Street Boise, ID 83720 Phone: 208-334-0670; Fax: 208-332-7307 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 630 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Illinois Adverse Pregnancy Outcomes Reporting System (APORS)

Purpose: surveillance, service, prevention Father: identification information (name, address, date- Partner: Department of Health, university, hospital, of-birth, etc.), demographic information (race/ethnicity, environment, advocacy, legislator sex, etc.) Program status: Currently collecting data Start year: 1988 Data Collection Methods and Storage Earliest year of available data: 1989 Database storage/management: MS Access, FoxPro, Organizational location: Department of Health Mainframe (Epidemiology/Environment) Population covered annually: 184,000 Data Analysis Statewide: yes Data analysis software: SAS, MS Access Current legislation or rule: Illinois Health and Quality assurance: re-abstraction of cases, double- Hazardous Substances Registry Act (410 ILCS 525) checking of assigned codes, comparison/verification Legislation year enacted: 1985 between multiple data sources, data/hospital audits, timeliness Case Definition Data use and analysis: routine statistical monitoring, Outcomes covered: ICD-9-CM Codes 740.0 through 759.9; rates by demographic and other variables, time trends, infants positive for controlled substances; serious epidemiologic studies (using only program data), needs congenital infections; congenital endocrine, metabolic or assessment, service delivery, referral, grant proposals, immune disorders; congenital blood disorders; other education/public awareness conditions such as retinopathy of prematurity, fetal alco System Integration Pregnancy outcome: live births, fetal deaths—stillbirths, spontaneous abortions, etc. (20 weeks gestation and System integration: No greater), live births, fetal deaths—stillbirths, spontaneous Funding abortions, etc. Age: End of newborn hospitalization Funding source: general state funds 69%, CDC grant 31% Residence: In-state births mandatory Other Web site: idph.state.il.us/about/epi/aporsrpt.htm Surveillance methods Surveillance reports on file: See Web Site Case ascertainment: Population based, passive Comments: APORS is transition to more active case ascertainment of newborn cases. Active ascertainment of ascertainment and expand case age to 2 years. major birth defects diagnosed up to 2 years of age began 7/01. Contact(s) Case finding/identification sources: Trish Egler, MPA Vital records: birth certificates, fetal death certificates Manager Delivery hospitals: disease index or discharge index, Illinois Department of Public Health discharge summaries, Hospitals are mandated to identiy 605 W. Jefferston Street newborn cases and report to IDPH. Springfield, IL 62761 Pediatric & tertiary care hospitals: disease index or Phone: 217-785-7133; Fax: 217-557-5152 discharge index, Hospitals are mandated to report E-mail: [email protected] newborns discharged from any to the NICU or speciality units. Tiefu Shen, MD, MPH, PhD Division Chief Case Ascertainment Illinois Department of Public Health Conditions warranting chart review in newborn period: 605 W. Jefferson Street any chart with a ICD9-CM code 740-759, any chart with Springfield, IL 62761 a selected list of ICD9-CM codes outside 740-759, any Phone: 217-785-7118; Fax: 217-524-1770 chart with a CDC/BPA code, any chart with selected E-mail: [email protected] defects or medical conditions ie abnormal facies, congenital heart disease, Ͻ1500 grams, all neonatal deaths 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.), birth defect diagnostic information Mother: identiﬁcation information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 631 Indiana Indiana Birth Defects and Problems Registry (IBDPR)

Purpose: surveillance, research, service prenatal diagnostic information, pregnancy/ Partner: university, hospital, child programs, advocacy delivery complications, maternal risk factors, family history groups, legislators Father: identification information (name, address, date- Program status: Currently collecting data of-birth, etc.), demographic information (race/ethnicity, Start year: 2002 sex, etc.), family history Earliest year of available data: 2005 (for births occurring in 2003) Data Collection Methods and Storage Organizational location: Department of Health Database storage/management: Oracle (Maternal and Child Health) Population covered annually: 85,000 Data Analysis Statewide: yes Data analysis software: SAS Current legislation or rule: IC 16-38-4-7 Quality assurance: validity checks, Rule 410 IAC 21-3 comparison/verification between multiple data sources, Legislation year enacted: 2001 data/hospital audits, clinical review, timeliness, physician reports Case Definition Outcomes covered: ICD-9-CM Codes 740-759.9, fetal System Integration deaths, metabolic and hearing disorders from Newborn System links: state registry, final birth file Screening, selected neoplasms, congenital blood System integration: The database is linked with births, disorders, certain eye disorders, Fetal Alcohol Spectrum deaths, fetal deaths, and newborn screening data. Disorder (760.71), and Pervasive Developmental Disorder (299.0) Funding Pregnancy outcome: live births (all gestational ages and Funding source: general state funds 3%, MCH funds 25%, birth weights), fetal deaths—stillbirths, spontaneous CDC grant 72% abortions, etc. (20 weeks gestation and greater), elective terminations Other Age: Less than 3 years of age; age up to 5 years for Fetal Web site: www.in.gov/isdh/programs/idbpr Alcohol Spectrum Disorder and Pervasive Developmental Disorder Contact(s) Residence: In and out of state births to state residents Nancy B. Meade, RD, MPH Program Manager, Genomics in Public Health/ Newborn Screening Surveillance methods Indiana State Department of Health Case ascertainment: Passive, population-based, hospital 2 North Meridian Street Case finding/identification sources: Indianapolis, IN 46204 Vital records: birth certificates, death certificates, Phone: 317-233-7827; Fax: 317-233-1300 matched birth/death file, fetal death certificates, elective E-mail: [email protected] termination certificates Other state based registries: newborn hearing screening program, cancer registry, newborn screening lab data Delivery hospitals: disease index or discharge index, chart audits of 45 targeted birth defects Pediatric & tertiary care hospitals: discharge summaries, chart audits of 45 targeted birth defects Other specialty facilities: prenatal diagnostic facilities (ultrasound, etc.) Other sources: physician reports

Case Ascertainment Conditions warranting chart review in newborn period: charts of 45 targeted medical conditions. Coding: ICD-9-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,

Birth Defects Research (Part A) 70:609–676 (2004) 632 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Iowa Iowa Birth Defects Registry (IBDR)

Purpose: surveillance, research, service, prevention, prematurity), ocular conditions, auditory/hearing Prevention Education Programs conditions, any infant with a codable defect Partner: Department of Health, university, hospital, Coding: CDC coding system based on BPA, ICD-9-CM environment, legislator Program status: Currently collecting data Data Collected Start year: 1983 Infant/fetus: identification information (name, address, Earliest year of available data: 1983 date-of-birth, etc.), demographic information Organizational location: University (race/ethnicity, sex, etc.), birth measurements (weight, Population covered annually: 37,831 avg 10 yr gestation, Apgars, etc.), tests and procedures, infant Statewide: yes complications, birth defect diagnostic information Current legislation or rule: Administrative Code of Iowa, Mother: identification information (name, address, date- Volume I, Chapter 135.37, Section 40, Division III of-birth, etc.), demographic information (race/ethnicity, Legislation year enacted: 1986; Revised 2001, 2003 sex, etc.), gravidity/parity, illnesses/conditions, prenatal Case Definition care, prenatal diagnostic information, pregnancy/delivery complications, family history Outcomes covered: Major Birth Defects and Metabolic Father: identification information (name, address, date- Disorders of-birth, etc.), demographic information (race/ethnicity, Pregnancy outcome: live births (all gestational ages and sex, etc.), family history birth weights), fetal deaths—stillbirths, spontaneous abortions, etc. (less than 20 week gestation, 20 weeks gestation and greater), elective terminations Data Collection Methods and Storage Age: 1 year Database storage/management: MS Access, Oracle, Residence: Maternal residence in Iowa at time of delivery Mainframe

Surveillance methods Data Analysis Case ascertainment: Population-based (state-wide), active Data analysis software: SPSS, SAS, MS Access, Oracle case ascertainment Quality assurance: validity checks, re-abstraction of cases, Case finding/identification sources: double-checking of assigned codes, comparison/verification Vital records: birth certificates, death certificates, fetal between multiple data sources, clinical review, timeliness death certificates Data use and analysis: routine statistical monitoring, Delivery hospitals: disease index or discharge index, baseline rates, rates by demographic and other variables, discharge summaries, obstetrics logs (i.e., labor & monitoring outbreaks and cluster investigations, time delivery), regular nursery logs, ICU/NICU logs or trends, capture-recapture analyses, observed vs expected charts, pediatric logs, postmortem/pathology logs, analyses, epidemiologic studies (using only program surgery logs, specialty outpatient clinics data), identification of potential cases for other Pediatric & tertiary care hospitals: disease index or epidemiologic studies, needs assessment, service discharge index, discharge summaries, ICU/NICU logs delivery, referral, grant proposals, education/public or charts, pediatric logs, postmortem/pathology logs, awareness, prevention projects surgery logs, laboratory logs, specialty outpatient clinics Other specialty facilities: prenatal diagnostic facilities System Integration (ultrasound, etc.), cytogenetic laboratories, genetic System links: state registry, final birth file, environmental counseling/clinical genetic facilities, maternal serum System integration: No screening facilities Other sources: physician reports, Outpatient Surgery Funding Facilities Funding source: general state funds 10%, CDC grant 90%

Case Ascertainment Other Conditions warranting chart review in newborn period: Web site: http://www.public-health.uiowa.edu/ any chart with a ICD9-CM code 740-759, any chart with a birthdefects selected list of ICD9-CM codes outside 740-759, any chart Surveillance reports on ﬁle: Iowa Birth Defects Registry with a CDC/BPA code, any chart with selected procedure Annual Report 2000, 2002 codes, any chart with selected defects or medical conditions Procedure manual available: yes ie abnormal facies, congenital heart disease, any birth certiﬁcate with a birth defect box checked, all stillborn Contact(s) infants, all neonatal deaths, all elective abortions, all Paul A. Romitti, PhD prenatal diagnosed or suspected cases Director Conditions warranting a chart review beyond the Iowa Birth Defects Registry newborn period: facial dysmorphism or abnormal facies, University of Iowa, C21-E GH, 200 Hawkins Dr failure to thrive, developmental delay, CNS condition (ie Iowa City, IA 52242 seizure), GI condition (ie intestinal blockage), Phone: 319-384-5012; Fax: 319-353-8711 cardiovascular condition, all infant deaths (excluding E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 633 Bradley D. McDowell, PhD Deputy Director Iowa Birth Defects Registry W117 Oakdale Hall Iowa City, IA 52242 Phone: 319-335-4107; Fax: 319-335-4030 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 634 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Kansas Birth Defects Reporting System

Purpose: Registry rates by demographic and other variables, monitoring Partner: hospital outbreaks and cluster investigations, Ad-hoc upon Program status: Currently collecting data request. Start year: 1985 Earliest year of available data: 1985 System Integration Organizational location: Department of Health (Vital System links: state registry Statistics), Department of Health (Maternal and Child System integration: Our program has a link with vital Health) statistics records. Population covered annually: 39,338 (Year 2002) Statewide: yes Funding Current legislation or rule: KSA 65-102 Funding source: MCH funds 100% Legislation year enacted: 1979 Contact(s) Case Definition Jane H. Stueve, RN, BSN Outcomes covered: The outcome data below are available Birth Defects Registry Coordinator from Office of Vital Statistics, but are not used as part of Kansas Department of Health & Environment a birth defects surveillance system. Twenty-four 1000 SW Jackson, Suite 220 anomalies are listed on the birth certificate and are Topeka, KS 66612-1274 reported, however, these are not linked to ICD codes. Phone: 785-291-3363; Fax: 785-291-3493 Pregnancy outcome: live births (all gestational ages and E-mail: [email protected] birth weights), fetal deaths—stillbirths, spontaneous abortions, etc. (less than 20 week gestation, 20 weeks Carloyn S. Nelson, BSE gestation and greater), elective terminations Director, Children’s Develomental Services Age: Passive reporting on congenital malformation Kansas Dept of Health and Environment reports continues through the first year of life. 1000 SW Jackson Suite 220 Residence: In and out of state births to Kansas residents Topeka, KS 66612-1274 and in-state births to out of state residents. Phone: 785-296-6136; Fax: 785-296-8626 E-mail: [email protected] Surveillance methods Case ascertainment: Passive, population-based., passive, hospital Case finding/identification sources: Vital records: birth certificates Pediatric & tertiary care hospitals: Congenital Malformations reporting form - sent by hospitals for infants up to one year of age.

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 Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Database storage/management: Mainframe

Data Analysis Data analysis software: SAS, Ad-hoc summary reports developed as needed from Crystal Reports. Quality assurance: Office of Vital Statistics conducts verification on birth certificate data. Data use and analysis: routine statistical monitoring,

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 635 Kentucky Kentucky Birth Surveillance Registry (KBSR)

Purpose: surveillance, service, prevention of birth defects Conditions warranting a chart review beyond the newborn Partner: Department of Health, university, hospital, period: facial dysmorphism or abnormal facies, failure to environment, child program, advocacy, legislator thrive, CNS condition (ie seizure), cardiovascular condition, Program status: Currently collecting data any infant with a codable defect Start year: 1996 Coding: ICD-9-CM, ICD-10 for Vital Statistics death data Earliest year of available data: 1998 Organizational location: Department for Public Health, Data Collected Division of Adult and Child Health Improvement, Infant/fetus: identification information (name, Maternal and Child Health Branch address, date-of-birth, etc.), demographic Population covered annually: 54,500 information (race/ethnicity, sex, etc.), birth Statewide: yes measurements (weight, gestation, Apgars, etc.), tests Current legislation or rule: KRS 211.651-211.670 and procedures, infant complications, birth defect Legislation year enacted: 1992 diagnostic information Mother: identification information (name, address, date- Case Definition of-birth, etc.), demographic information (race/ethnicity, Outcomes covered: Major Birth Defects, Genetic Diseases, sex, etc.), gravidity/parity, illnesses/conditions, prenatal Fetal Mortality care, prenatal diagnostic information, Pregnancy outcome: live births (all gestational ages and pregnancy/delivery complications, family history birth weights), fetal deaths—stillbirths, spontaneous Father: identification information (name, address, date- abortions, etc. (20 weeks gestation and greater), 20 weeks of-birth, etc.), demographic information (race/ethnicity, or 350 gms., elective terminations (20 weeks gestation sex, etc.), family history and greater), Elective terminations prior to 20 weeks are identified in pilot active surveillance project at eight Data Collection Methods and Storage hospitals in Kentucky which represent 36% of births. Database storage/management: MS Access, Mainframe Age: up to fifth birthday Residence: All in-state births; out of state births to state Data Analysis residents Data analysis software: SAS, MS Access Quality assurance: double-checking of assigned codes, comparison/verification between multiple data sources, Surveillance methods data/hospital audits, clinical review, timeliness Case ascertainment: Combination of active and passive, Data use and analysis: routine statistical monitoring, population-based baseline rates, rates by demographic and other variables, Case finding/identification sources: monitoring outbreaks and cluster investigations, time Vital records: birth certificates, death certificates, trends, identification of potential cases for other matched birth/death file, fetal death certificates, Medical epidemiologic studies, needs assessment, service laboratory reporting is mandated, voluntary outpatient delivery, referral, grant proposals, education/public reporting awareness, prevention projects Other state based registries: programs for children with special needs, newborn hearing screening program, System Integration newborn biochemical screening program System links: final birth file, KBSR will be incorporated Delivery hospitals: disease index or discharge index, into the early childhood data repository in Kentucky discharge summaries, obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts, specialty outpatient Funding clinics, Laboratory records Funding source: general state funds 25%, CDC grant 75% Pediatric & tertiary care hospitals: disease index or discharge index, discharge summaries, ICU/NICU logs Other or charts, Laboratory records Web site: http://publichealth.state.ky.us/kbsr.htm Other specialty facilities: prenatal diagnostic facilities Surveillance reports on file: legislation and regulation; (ultrasound, etc.), cytogenetic laboratories, genetic Hospital Reporting Administrative Manual; draft counseling/clinical genetic facilities confidentiality guidelines; conditions definitions, KBSR Other sources: physician reports, Local health fact sheet, KBSR brochure departments Procedure manual available: yes

Case Ascertainment Contact(s) Conditions warranting chart review in newborn period: Joyce M. Robl, MS, CGC any chart with a ICD9-CM code 740-759, any chart with KBSR Program Administrator a selected list of ICD9-CM codes outside 740-759, any Kentucky Department for Public Health chart with selected defects or medical conditions ie 275 East Main Street, HS 2GW-A abnormal facies, congenital heart disease, any birth Frankfort, KY 40621 certiﬁcate with a birth defect box checked, all prenatal Phone: 502-564-2154 x3768; Fax: 502-564-8389 diagnosed or suspected cases E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 636 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Sandy G Fawbush, RN Nurse Consultant/Inspector Kentucky Department for Public Health 275 East Main Street, HS 2GW-A Frankfort, KY 40621 Phone: 502-564-2154 x3761; Fax: 502-564-8389 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 637 Louisiana Louisiana Birth Defects Monitoring Network (LBDMN)

Purpose: surveillance, service Partner: university, hospital, child program, advocacy Program status: Program has not started collecting data yet Start year: 2004 Earliest year of available data: 2005 Organizational location: Children’s Special Health Services Population covered annually: 65,000 ϩ Statewide: yes Current legislation or rule: R.S. 40:31.41 - 40:31.48, Act No. 194 Legislation year enacted: 2001

Case Deﬁnition Outcomes covered: major structural, functional, or genetic birth defect Age: up to third birthday Residence: in- and out-of-state births to state residents (tentative criteria)

Surveillance methods Case ascertainment: active Case ﬁnding/identiﬁcation sources: Vital records: in progress Other state based registries: in progress Delivery hospitals: in progress Pediatric & tertiary care hospitals: in progress Third party payers: in progress

Case Ascertainment Conditions warranting chart review in newborn period: in progress Coding: in progress

Data Collection Methods and Storage Database storage/management: MS Access, in progress

Data Analysis Data analysis software: in progress Quality assurance: in progress Data use and analysis: in progress

System Integration System links: in progress

Other Web site: http://oph.dhh.state.la.us/childrensspecial/ birthdefect/index.html

Contact(s) Linda B. Pippins, MCD Administrator, Children’s Special Health Services DHH/Ofﬁce of Public Health 325 Loyola Ave., Ste. 607 New Orleans, LA 70112 Phone: 504-568-5055; Fax: 504-568-7529 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 638 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Maine Maine Birth Defects Program (MBDP)

Purpose: surveillance, service, prevention gestation, Apgars, etc.), tests and procedures, infant Partner: university, hospital, nursing, child program, complications, birth defect diagnostic information advocacy Mother: identiﬁcation information (name, address, date- Program status: Currently collecting data of-birth, etc.), demographic information (race/ethnicity, Start year: 1999 sex, etc.), gravidity/parity, illnesses/conditions, prenatal Earliest year of available data: Reporting began May 1, care, prenatal diagnostic information, 2003 pregnancy/delivery complications, family history Organizational location: Department of Health and Father: identiﬁcation information (name, address, date- Human Services, Bureau of Health of-birth, etc.), demographic information (race/ethnicity, Population covered annually: 13,500 sex, etc.), illnesses/conditions, family history Statewide: yes Current legislation or rule: 22 MRSA c. 1687 Data Collection Methods and Storage Legislation year enacted: 1999 Database storage/management: MS Access, Citrix

Case Deﬁnition Data Analysis Outcomes covered: Selected major birth defects: NTD, Data analysis software: SAS, Stat-exact Clefts, Gastroschisis and Omphalocele, Trisomy 21 and Quality assurance: validity checks, re-abstraction of Major heart defects, cases, double-checking of assigned codes, comparison/ Pregnancy outcome: live births (all gestational ages and veriﬁcation between multiple data sources, data/hospital birth weights), fetal deaths—stillbirths, spontaneous audits, clinical review, timeliness abortions, etc. (20 weeks gestation and greater), Data use and analysis: routine statistical monitoring, prenatally diagnosed at any gestation, elective baseline rates, rates by demographic and other variables, terminations observed vs expected analyses, needs assessment, service Age: Through age one delivery, referral, grant proposals, education/public Residence: All in-state births to Maine residents awareness, prevention projects

Surveillance methods System Integration Case ascertainment: Combination of active and passive System links: state registry, final birth file case ascertainment, population-based Funding Case finding/identification sources: Vital records: birth certificates, death certificates, Funding source: MCH funds 5%, genetic screening matched birth/death file, fetal death certificates revenues 25%, CDC grant 70% Other state based registries: programs for children with Other special needs, newborn hearing screening program, newborn biochemical screening program Web site: pending Delivery hospitals: disease index or discharge index, Additional information on file: Program manual in draft specialty outpatient clinics form. Pediatric & tertiary care hospitals: disease index or Contact(s) discharge index, ICU/NICU logs or charts, pediatric logs, specialty outpatient clinics Ellie Mulcahy, RNC Other specialty facilities: genetic counseling/clinical Director, Genetics Program genetic facilities, maternal serum screening facilities Maine Bureau of Health Other sources: physician reports 11 State House Station, 286 Water St.-7th floor Augusta, ME 04333 Phone: 207-287-4623; Fax: 207-287-4743 Case Ascertainment E-mail: [email protected] Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, any chart with Patricia Y. Day, RN selected defects or medical conditions ie abnormal facies, Program Coordinator, MBDP congenital heart disease, any birth certificate with a birth Maine Bureau of Health defect box checked, all prenatal diagnosed or suspected 11 State House Station, 286 Water St. 7th floor cases Augusta, ME 04333 Conditions warranting a chart review beyond the Phone: 207-287-8424; Fax: 207-287-4743 newborn period: facial dysmorphism or abnormal facies, E-mail: [email protected] cardiovascular condition, any infant with a codable defect Coding: ICD-9-CM

Data Collected Infant/fetus: identiﬁcation information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), birth measurements (weight,

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 639 Maryland Maryland Birth Defects Reporting And Information System (BDRIS)

Purpose: surveillance, research, service Data Collected Partner: Department of Health, university, hospital, Infant/fetus: identification information (name, address, environment, child program, advocacy, legislator date-of-birth, etc.), demographic information Program status: Currently collecting data (race/ethnicity, sex, etc.), birth measurements (weight, Start year: 1983 gestation, Apgars, etc.), tests and procedures, birth defect Earliest year of available data: 1984 diagnostic information Organizational location: Family Health Administration, Mother: identification information (name, address, date- Office for Genetics & Children with Special Health Care of-birth, etc.), demographic information (race/ethnicity, Needs sex, etc.), gravidity/parity, illnesses/conditions, prenatal Population covered annually: 68,000 care, prenatal diagnostic information, Statewide: yes pregnancy/delivery complications, maternal risk factors, Current legislation or rule: Health-General Article, family history Section 18-206; Annotated Code of Maryland Father: identification information (name, address, date- Legislation year enacted: 1982 of-birth, etc.), demographic information (race/ethnicity, sex, etc.), family history

Case Definition Data Collection Methods and Storage Outcomes covered: Selected Birth Defects - Database storage/management: MS Access, Mainframe, Anencephaly, Spina Bifida, Hydrocephaly, Cleft Lip, Visual dBASE, SAS, ASCII files Cleft Palate, Esophageal Atresia/Stenosis, Rectal/Anal Atresia, Hypospadias, Reduction Deformity - Upper or Data Analysis Lower Limb, Congenital Hip Dislocation, and Down Data analysis software: SAS Syndrome Quality assurance: validity checks, double-checking of Pregnancy outcome: live births (all gestational ages and assigned codes, comparison/verification between birth weights), fetal deaths—stillbirths, spontaneous multiple data sources Ͼϭ abortions, etc. (20 weeks gestation and greater or 500 Data use and analysis: routine statistical monitoring, Ͻ grams weight; We do accept reports on fetal deaths 500 baseline rates, rates by demographic and other variables, Ͻ grams or 20 weeks if sent to us.), elective terminations monitoring outbreaks and cluster investigations, time Ͼϭ (20 weeks gestation and greater or 500 grams weight; trends, time-space cluster analyses, observed vs expected Ͻ Ͻ We do accept reports on terminations 500grams or 20 analyses, epidemiologic studies (using only program weeks if sent to us.) data), identification of potential cases for other Age: Newborn epidemiologic studies, needs assessment, service Residence: All in-state births delivery, referral, grant proposals, education/public awareness, prevention projects

Surveillance methods System Integration Case ascertainment: Passive surveillance, multiple System links: In the process of linkage with other state source, population based registries/databases Case finding/identification sources: System integration: No Vital records: birth certificates, fetal death certificates Other state based registries: programs for children with Funding special needs, newborn hearing screening program, Funding source: general state funds 100% newborn biochemical screening program, Sickle Cell Disease Other Delivery hospitals: obstetrics logs (i.e., labor & delivery), Web site: http://fha.state.md.us/genetics (then select regular nursery logs, ICU/NICU logs or charts, Sentinel Birth Defects Reporting and Information System) Birth Defects hospital report form is our primary source. Surveillance reports on file: Provisional surveillance Pediatric & tertiary care hospitals: discharge reports 1984-1992; 1995-2000, 2001 summaries, ICU/NICU logs or charts, Sentinel Birth Procedure manual available: yes Defects hospital report form is our primary source. Additional information on file: Copies of publications, Midwifery facilities: Yes legislation, miscellaneous booklets and other information Other specialty facilities: genetic counseling/clinical related to birth defects surveillance in Maryland. genetic facilities, maternal serum screening facilities Contact(s) Case Ascertainment Susan R. Panny, MD Conditions warranting chart review in newborn period: Director, Office for Genetics and CSHCN any chart with a ICD9-CM code 740-759, any chart with Maryland Dept. of Health & Mental Hygiene selected defects or medical conditions ie abnormal facies, 201 W. Preston Street, Room 421A congenital heart disease, any birth certificate with a birth Baltimore, MD 21201 defect box checked, All fetal death certificates Phone: 410-767-6730; Fax: 410-333-5047 Coding: ICD-9-CM E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 640 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Rosemary A. Baumgardner, BA Data Manager, Birth Defects Program Maryland Dept. of Health & Mental Hygiene 201 W. Preston Street, Room 423A Baltimore, MD 21201 Phone: 410-767-6801; Fax: 410-333-5047 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 641 Massachusetts Massachusetts Center For Birth Defects Research And Prevention, Birth Defect Monitoring Program, Massachusetts Department Of Public Health (MCBDRP)

Purpose: surveillance, research, service, prevention Data Collected Partner: university, hospital, environment, advocacy Infant/fetus: identification information (name, address, Program status: Currently collecting data date-of-birth, etc.), demographic information Start year: 1997 (race/ethnicity, sex, etc.), birth measurements (weight, Earliest year of available data: 1999 for statewide data gestation, Apgars, etc.), tests and procedures, infant Organizational location: Bureau of Family and complications, birth defect diagnostic information Community Health Mother: identification information (name, address, date- Population covered annually: 81,000 of-birth, etc.), demographic information (race/ethnicity, Statewide: yes sex, etc.), gravidity/parity, illnesses/conditions, prenatal Current legislation or rule: Massachusetts General Laws, care, prenatal diagnostic information, Chapter 111, Section 67E. In 2002 the Massachusetts pregnancy/delivery complications, family history Legislature amended this statute, expanding the birth Father: identification information (name, address, date- defects monitoring program. The new law: 1) increases of-birth, etc.), demographic information (race/ethnicity, mandated reporting up to age three; 2) requires sex, etc.), family history physicians to report to MDPH within 30 days of diagnosis; 3) sets out requirements for the use of this Data Collection Methods and Storage data; 4) requires MDPH to promulgate regulations Database storage/management: Microsoft Access governing the operation of the Birth Defects Monitoring Program. Data Analysis Legislation year enacted: 1963 Data analysis software: SAS, Microsfot Access, Microsoft Excel Quality assurance: validity checks, re-abstraction of Case Definition cases, double-checking of assigned codes, comparison/ Outcomes covered: Major structural birth defects and verification between multiple data sources, data/hospital chromosomal anomalies of medical, surgical or cosmetic audits, clinical review, timeliness significance. Data use and analysis: routine statistical monitoring, Pregnancy outcome: live births, reportable fetal deaths— baseline rates, rates by demographic and other variables, stillbirths, spontaneous abortions, etc. (20 weeks Ͼϭ monitoring outbreaks and cluster investigations, time gestation and greater or 350 grams) trends, observed vs expected analyses, epidemiologic Age: up to one year, up to three years when new studies (using only program data), identification of legislation implemented (regulations pending) potential cases for other epidemiologic studies, grant Residence: in and out-of-state births to state residents proposals, Selected cases from surveillance are eligible for CDC’s National Birth Defects Prevention Study Surveillance methods Case ascertainment: population based, state-wide, System Integration combination of active case ascertainment and System links: final birth file, fetal death file, administrative review Massachusetts Pregnancy to Early Life Longitudinal Case finding/identification sources: (PELL) Linkage Project Vital records: birth certificates, death certificates, fetal death certificates Funding Delivery hospitals: disease index or discharge index, Funding source: general state funds 10%, CDC grant 90% obstetrics logs (i.e., labor & delivery), regular nursery logs, ICU/NICU logs or charts, postmortem/pathology Other logs Web site: website in development Pediatric & tertiary care hospitals: disease index or Surveillance reports on file: First surveillance report discharge index, ICU/NICU logs or charts, postmortem/ published in November 2001; available online at http:// pathology logs www.state.ma.us/dph/bhsre/birthdefects/bdefects.htm Other sources: physician reports or by calling contacts; MCBDRP Prevention and Resource Booklet at Case Ascertainment http://www.state.ma.us/dph/bhsre/birthdefects/bdefects.htm Conditions warranting chart review in newborn period: Procedure manual available: yes any chart with a ICD9-CM code 740-759, any chart with Comments: Statewide coverage started October 1998 a selected list of ICD9-CM codes outside 740-759, any chart with selected defects or medical conditions i.e. Contact(s) abnormal facies, congenital heart disease, all stillborn Linda Casey, MS, MPH infants Administration Director of Research and Operation Conditions warranting a chart review beyond the Massachusetts Department of Public Health newborn period: facial dysmorphism or abnormal facies, 5th Floor, 250 Washington Street auditory/hearing conditions, any infant with a codable Boston, MA 02108-4619 defect Phone: 617-624-5507; Fax: 617-624-5574 Coding: CDC coding system based on BPA E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 642 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Cathy Higgins, BA Surveillance Coordinator Massachusetts Department of Public Health 5th Floor, 250 Washington Street Boston, MA 02108-4619 Phone: 617-624-5510; Fax: 617-624-5574 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 643 Michigan Michigan Birth Defects Registry (MBDR)

Purpose: surveillance, research, service, prevention, gestation, Apgars, etc.), tests and procedures, infant incidence and mortality statistics complications, birth defect diagnostic information Partner: Department of Health, university, hospital, Mother: identification information (name, address, date- environment, legislator of-birth, etc.), demographic information (race/ethnicity, Program status: Currently collecting data sex, etc.), gravidity/parity, illnesses/conditions, prenatal Start year: 1992 care, prenatal diagnostic information, Earliest year of available data: 1992 pregnancy/delivery complications Organizational location: Department of Health Father: identification information (name, address, date- (Epidemiology/Environment), Department of Health of-birth, etc.), demographic information (race/ethnicity, (Vital Statistics) sex, etc.) Population covered annually: 135,400 Statewide: yes Data Collection Methods and Storage Current legislation or rule: Public Act 236 of 1988 Database storage/management: FoxPro Legislation year enacted: 1988 Data Analysis Data analysis software: SPSS, MS Access, Fox-pro Case Definition Quality assurance: validity checks, re-abstraction of Outcomes covered: Congenital anomalies, certain cases, double-checking of assigned codes, comparison/ infectious diseases, conditions caused by maternal verification between multiple data sources, data/hospital exposures and other diseases of major organ systems audits, timeliness Pregnancy outcome: live births (all gestational ages and Data use and analysis: routine statistical monitoring, birth weights) baseline rates, rates by demographic and other variables, Age: up to two years after delivery monitoring outbreaks and cluster investigations, time Residence: Michigan births regardless of residence, out of trends, observed vs expected analyses, epidemiologic state births diagnosed or treated in Michigan regardless studies (using only program data), identification of of residence potential cases for other epidemiologic studies, needs assessment, service delivery, referral, grant proposals, Surveillance methods education/public awareness, prevention projects Case ascertainment: passive, population-based, combination System Integration Case finding/identification sources: System links: final birth file Vital records: birth certificates, death certificates, fetal System integration: No, data from vital records and death reporting, matched birth/death file, cytogenic other sources are extracted and loaded into registry as laboratories, genetics clinics, hospital discharge data opposed to truly integrated database structures. Other state based registries: programs for children with special needs, newborn hearing screening program, Funding newborn biochemical screening program, cancer registry Funding source: general state funds 50%, CDC grant 25%, Delivery hospitals: disease index or discharge index, other federal funding 12%, EHDI 12.5% specialty outpatient clinics Pediatric & tertiary care hospitals: disease index or Other discharge index, specialty outpatient clinics Web site: http://www.michigan.gov/mdch/0,1607,7-132- Third party payers: Medicaid databases 2944_4670–,00.html Other specialty facilities: cytogenetic laboratories, Surveillance reports on file: birth defects incidence and genetic counseling/clinical genetic facilities mortality annual reports Procedure manual available: yes Case Ascertainment Conditions warranting chart review in newborn period: Contact(s) any chart with a ICD9-CM code 740-759, any chart with Glenn Copeland, MBA a selected list of ICD9-CM codes outside 740-759, any Director chart with selected defects or medical conditions ie Michigan Birth Defects Registry abnormal facies, congenital heart disease, any birth 3423 N. Logan certificate with a birth defect box checked Lansing, MI 48909 Conditions warranting a chart review beyond the Phone: 517-335-8677; Fax: 517-335-9513 newborn period: facial dysmorphism or abnormal facies, E-mail: [email protected] ocular conditions, auditory/hearing conditions, any infant with a codable defect Lorrie Simmons, RHIT Coding: ICD-9-CM Field Representative Michigan Dept. of Community Health Data Collected 3423 N. Logan St. Infant/fetus: identification information (name, address, Lansing, MI 48909 date-of-birth, etc.), demographic information Phone: 517-335-9197; Fax: 517-335-8711 (race/ethnicity, sex, etc.), birth measurements (weight, E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 644 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Minnesota

Purpose: surveillance, research, service, prevention Data Analysis Partner: Department of Health, university, hospital, early Data analysis software: SAS childhood prevention programs, advocacy, legislator Quality assurance: validity checks, double-checking of Program status: Currently collecting data assigned codes, comparison/veriﬁcation between Start year: 2005 multiple data sources, physician review as needed, Earliest year of available data: 2005 additional quality control checks may be added after Organizational location: Department of Health, start-up Environmental Health Data use and analysis: epidemiologic studies (using only Population covered annually: 68,000 program data), referral, grant proposals, Statewide: yes education/public awareness, prevention projects; Note: Current legislation or rule: MS 144.2215 full system implementation in 2005 and many of these Legislation year enacted: 2004 listed above will be used.

Case Definition System Integration Outcomes covered: major “reported birth defects” as System links: final birth file defined by CDC and ICD-9 codes. Pregnancy outcome: live births, fetal deaths—stillbirths, Funding spontaneous abortions, etc. Funding source: general state funds 5%, CDC grant 90%, Age: up to 1 year after delivery March of Dimes in-kind match to CDC grant 5% Residence: only will abstract in-state data Other Web site: www.health.state.mn.us Surveillance methods Surveillance reports on file: data summaries and Case ascertainment: Combination of active and passive services/prevention updates are availabe on website case ascertainment, population-based Comments: System will use an opt-out format that will Case finding/identification sources: be monitored regularly to ensure that data trends remain Vital records: birth certificates, death certificates, valid. matched birth/death file, fetal death certificates, infant death records Contact(s) Other state based registries: programs for children with Myron Falken, PhD, MPH special needs, newborn hearing screening program, Principal Epidemiologist newborn biochemical screening program Minnesota Department of Health Delivery hospitals: disease index or discharge index, 121 East 7th Place, Suite 220 discharge summaries, obstetrics logs (i.e., labor & St. Paul, MN 55164 delivery), ICU/NICU logs or charts, specialty outpatient Phone: 651-215-0877; Fax: 651-215-0975 clinics E-mail: [email protected] Pediatric & tertiary care hospitals: disease index or discharge index, discharge summaries, ICU/NICU logs Daniel Symonik, PhD or charts, specialty outpatient clinics Unti Supervisor Third party payers: Medicaid databases, HMOs Minnesota Department of Health 121 East 7th Place, Suite 220 Case Ascertainment St. Paul, MN 55164 Conditions warranting chart review in newborn period: Phone: 651-215-0776; Fax: 651-215-0975 any chart with a ICD9-CM code 740-759, any chart with E-mail: [email protected] a selected list of ICD9-CM codes outside 740-759, any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), any birth certificate with a birth defect box checked Coding: ICD-9-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 Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 645 Mississippi Mississippi Birth Defects Registry (MBDR)

Purpose: surveillance Data Collection Methods and Storage Partner: Department of Health, hospital Database storage/management: MS Access Program status: Currently collecting data Start year: 2000 Data Analysis Earliest year of available data: 2000 Data analysis software: MS Access Organizational location: Department of Health Quality assurance: validity checks (Maternal and Child Health), Division of Genetic Data use and analysis: routine statistical monitoring, Services, Mississippi State Department of Health education/public awareness Population covered annually: 42,000 Statewide: yes Funding Current legislation or rule: Section 41-21-205 of the Funding source: MCH funds 10%, genetic screening Mississippi Code revenues 90% Legislation year enacted: 1997 Contact(s) Case Definition Jerry McClure, BS Outcomes covered: A birth defect is an abnormality of Director, Genetics Program structure, function or metabolism, whether genetically Mississippi State Dept. of Health determined or a result of environmental influences P.O. Box 1700 during embryonic or fetal life. A birth defect may Jackson, MS 39215-1700 present from the time of conception through one year Phone: 601-576-7619; Fax: 601-576-7498 after birth, or later in life. E-mail: [email protected] Pregnancy outcome: live births (all gestational ages and birth weights, 350 grams or more) Pat Terry, LSW Age: 0to21 Branch Director Residence: In and out of state births to state residents Mississippi State Dept. of Health P.O. Box 1700 Jackson, MS 39215-1700 Surveillance methods Phone: 601-576-7619; Fax: 601-576-7498 Case ascertainment: combination of active and passive E-mail: [email protected] case ascertainment Case finding/identification sources: Vital records: birth certificates, fetal death certificates Other state based registries: newborn hearing screening program, newborn biochemical screening program, cancer registry Delivery hospitals: disease index or discharge index, discharge summaries Pediatric & tertiary care hospitals: disease index or discharge index, discharge summaries Other sources: physician reports

Case Ascertainment Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, any chart with a selected list of ICD9-CM codes outside 740-759, any birth certiﬁcate with a birth defect box checked Conditions warranting a chart review beyond the newborn period: CNS condition (ie seizure), GI condition (ie intestinal blockage), GU condition (ie recurrent infections), cardiovascular condition, ocular conditions, auditory/hearing conditions, any infant with a codable defect Coding: ICD-9-CM

Data Collected Infant/fetus: identiﬁcation information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), birth defect diagnostic information Mother: identiﬁcation information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Birth Defects Research (Part A) 70:609–676 (2004) 646 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Missouri Missouri Birth Defects Registry

Purpose: surveillance, research, service, prevention Data use and analysis: routine statistical monitoring, Partner: Department of Health, university, hospital, baseline rates, rates by demographic and other variables, environment, child program, advocacy, legislator monitoring outbreaks and cluster investigations, time Program status: Currently collecting data trends, time-space cluster analyses, observed vs expected Start year: 1985 analyses, epidemiologic studies (using only program Earliest year of available data: 1980 data), needs assessment, service delivery, referral, grant Organizational location: Department of Health (Vital proposals, education/public awareness, prevention Statistics) projects Population covered annually: 75,000 Statewide: yes System Integration System links: final birth file Case Definition Outcomes covered: ICD9 codes 740-759, plus genetic, Funding metabolic, and other disorders Funding source: general state funds 20%, CDC grant 80% Pregnancy outcome: live births (all gestational ages and birth weights), fetal deaths—stillbirths, spontaneous Other abortions, etc. (20 weeks gestation and greater, fetal Surveillance reports on file: Missouri Birth Defects 1995- death certificates are only source of data). Surveillance of 99 terminations currently limited to NTDs, expansion in progress Contact(s) Age: up to one year after delivery Janice M Bakewell, BA Residence: in and out of state births to state residents Research Analyst Missouri Dept of Health, Health Data Analysis Surveillance methods PO Box 570, 920 Wildwood Case ascertainment: passive, multi-source Jefferson City, MO 65102 Case finding/identification sources: Phone: 573-751-6278; Fax: 573-526-4102 Vital records: birth certificates, death certificates, E-mail: [email protected] matched birth/death file, fetal death certificates Other state based registries: programs for children with special needs, newborn hearing screening program, newborn biochemical screening program Delivery hospitals: discharge summaries Pediatric & tertiary care hospitals: discharge summaries, specialty outpatient clinics Other sources: enrollment data, Missouri Dept. of Mental Health

Case Ascertainment Coding: ICD-9-CM, ICD-10

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, pregnancy/delivery complications Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Database storage/management: SAS (Unix)

Data Analysis Data analysis software: SAS Quality assurance: validity checks, double-checking of assigned codes, comparison/veriﬁcation between multiple data sources

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 647 Montana Montana Birth Outcomes Monitoring System (MBOMS)

Purpose: surveillance, service, prevention Data Collection Methods and Storage Partner: Department of Health, hospital, advocacy, Database storage/management: Oracle private practice physicians Program status: Currently collecting data Data Analysis Start year: 1999 Data analysis software: SAS, Cluter Seer 2 Earliest year of available data: 2000 Quality assurance: double-checking of assigned codes, Organizational location: Department of Health comparison/verification between multiple data sources, (Maternal and Child Health) clinical review, timeliness Population covered annually: 11,000 Data use and analysis: routine statistical monitoring, Statewide: yes baseline rates, rates by demographic and other variables, Current legislation or rule: none monitoring outbreaks and cluster investigations, observed vs expected analyses, epidemiologic studies Case Definition (using only program data), identification of potential Outcomes covered: Major structural birth defects, cases for other epidemiologic studies, referral, grant chromosomal anomalies proposals, education/public awareness, prevention Pregnancy outcome: live births (Ͼ20 weeks gestation & projects 500 grams), fetal deaths—stillbirths, spontaneous abortions, etc. (all gestational ages), elective System Integration terminations System links: state registry Age: Birth through age 3 System integration: Integrated with Children with Residence: in-state births and out of state births to MT Special Health Care Needs database residents Funding Surveillance methods Funding source: CDC grant 100% Case ascertainment: combination of active and passive case ascertainment Contact(s) Case finding/identification sources: Sib Clack Vital records: birth certificates, death certificates, fetal Supervisor death certificates FCHB/ DPHHS Other state based registries: programs for children with P.O. Box 202951 special needs, newborn hearing screening program, Helena, MT 59620-2951 newborn biochemical screening program Phone: 406-444-4119; Fax: 406-444-2606 Delivery hospitals: disease index or discharge index E-mail: [email protected] Third party payers: Medicaid databases, SSDI referrals Other specialty facilities: prenatal diagnostic facilities (ultrasound, etc.), cytogenetic laboratories, genetic counseling/clinical genetic facilities, maternal serum screening facilities Other sources: physician reports, fetal pathology

Case Ascertainment Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, any birth certiﬁcate with a birth defect box checked Conditions warranting a chart review beyond the newborn period: cardiovascular condition Coding: ICD-9-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, birth defect diagnostic information Mother: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.), gravidity/parity, prenatal diagnostic information Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Birth Defects Research (Part A) 70:609–676 (2004) 648 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Nebraska Nebraska Birth Defects Registry

Purpose: surveillance, research; we are in the process of Data Collected developing a program of referral to services and Infant/fetus: identification information (name, address, prevention programs. date-of-birth, etc.), demographic information Partner: DHHS, MCH, and hospital (race/ethnicity, sex, etc.), birth measurements (weight, Program status: Currently collecting data gestation, Apgars, etc.), birth defect diagnostic Start year: 1973 information Earliest year of available data: 1973 Mother: identification information (name, address, date- Organizational location: Nebraska Health and Human of-birth, etc.), demographic information (race/ethnicity, Services Regulation & Licensure Data Management sex, etc.), gravidity/parity Section Father: identification information (name, address, date- Population covered annually: Statewide, 24,000ϩ births of-birth, etc.), demographic information (race/ethnicity, annually sex, etc.) Statewide: yes Current legislation or rule: Laws 1972, LB 1203, §1, §2, Data Collection Methods and Storage §3, §4 (alternate citation: Public Health and Welfare Database storage/management: Key-entry 3 [Codes] §71-645, §71-646, §71-647, §71-648, §71-649) Legislation year enacted: 1972 Data Analysis Data analysis software: SAS Case Definition Quality assurance: re-abstraction of cases, double- Outcomes covered: All birth defects, exclusions according checking of assigned codes, comparison/verification to CDC exclusion list between multiple data sources, case finding, data coding Pregnancy outcome: live births (greater than 20 weeks and entry and greater than 500 grams), fetal deaths—stillbirths, Data use and analysis: baseline rates, monitoring spontaneous abortions, etc. (20 weeks gestation and outbreaks and cluster investigations, epidemiologic greater) studies (using only program data), identification of Age: Birth to 1 year potential cases for other epidemiologic studies, needs Residence: In-state and out-of-state birth to state assessment, grant proposals, incidence rates, trend resident analysis, birth defect registry Funding Surveillance methods Funding source: MCH funds 100% Case ascertainment: Combination of active and passive case ascertainment Other Case finding/identification sources: Surveillance reports on file: 2002 report in Vital Statistics Vital records: birth certificates, death certificates, fetal Report. 2003 report will be available in published form death certificates in August of 2004. Delivery hospitals: disease index or discharge index, Procedure manual available: Yes discharge summaries, ICU/NICU logs or charts, Additional information on file: Copy of legislation, Nebraska Birth Defects Prevention Program Congenital congenital defects case record form Defects Case Record Comments: State legislation introduced to allow release Pediatric & tertiary care hospitals: disease index or of patient-identifying information to approved researcher discharge index, discharge summaries, ICU/NICU logs for the purpose of research; development of a system so or charts, specialty outpatient clinics, Nebraska Birth that hospitals may use the electronic birth certificate to Defects Prevention Program Congenital Defects Case initially alert the surveillance program of the birth of a Record child with an anomaly. Other specialty facilities: genetic counseling/clinical genetic facilities Contact(s) Other sources: physician reports Carla M. Becker, RHIA Health Data Manager Case Ascertainment Nebraska Health and Human Services System Conditions warranting chart review in newborn period: 301 Centennial Mall South P.O. Box 95007 any chart with a ICD9-CM code 740-759, any chart with Lincoln, NE 68509-5007 selected defects or medical conditions ie abnormal facies, Phone: 402-471-3575; Fax: 402-471-9728 congenital heart disease, any birth certificate with a birth E-mail: [email protected] defect box checked Conditions warranting a chart review beyond the newborn period: facial dysmorphism or abnormal facies, CNS condition (ie seizure), GI condition (ie intestinal blockage), GU condition (ie recurrent infections), cardiovascular condition, ocular conditions, auditory/ hearing conditions, any infant with a codable defect Coding: CDC coding system based on BPA

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 649 Nevada Nevada Birth Defects Registry

Purpose: surveillance, service, prevention gestation, Apgars, etc.), birth defect diagnostic Partner: university information Program status: Currently collecting data Mother: identiﬁcation information (name, address, date- Start year: 2000 of-birth, etc.), demographic information (race/ethnicity, Earliest year of available data: 2000 sex, etc.), illnesses/conditions, prenatal care, pregnancy/ Organizational location: Division of Health, Bureau of delivery complications Family Health Services (MCH) Father: identiﬁcation information (name, address, date- Population covered annually: 33,000 of-birth, etc.), demographic information (race/ethnicity, Statewide: No: Year 2000 data is for Las Vegas only. sex, etc.) Year 2001 - Statewide data complete. Current legislation or rule: NRS 442.300 - 442.330 - Birth Data Collection Methods and Storage Defects Registry Legislation *** Regulation ϭ NAC 442 Database storage/management: MS Access, Oracle, Legislation year enacted: 1999 Mainframe

Case Definition Data Analysis Outcomes covered: major birth defects and genetic Data analysis software: SPSS, SAS, MS Access diseases Quality assurance: double-checking of assigned codes, Pregnancy outcome: live births (all gestational ages and comparison/verification between multiple data sources, birth weights), fetal deaths (20 weeks gestation and data/hospital audits greater), elective terminations (20 weeks gestation and Data use and analysis: routine statistical monitoring, greater) baseline rates, rates by demographic and other variables, Age: Cover from 0-7 years of age education/public awareness Residence: In-state births System Integration System links: state registry Surveillance methods System integration: Nevada has a data warehouse which Case ascertainment: Combination of active and passive is currently able to link approximately 30 databases. ascertainment initially. Currently - system is a “passive” Plans for this system indicate eventual capacity to link system., active ascertainment to re-commence 7/1/04 up to 45 databases. Case finding/identification sources: Vital records: birth certificates, matched birth/death file, Funding Hospital medical records - for year 2000 Funding source: service fees 100% Other state based registries: programs for children with special needs, newborn hearing screening program, Contact(s) newborn biochemical screening program, cancer registry Judith Wright Delivery hospitals: disease index or discharge index Bureau Chief Pediatric & tertiary care hospitals: disease index or Bureau of Family Health Services - State Health discharge index Division Third party payers: Medicaid databases 3427 Goni Road, Suite 108 Other specialty facilities: genetic counseling/clinical Carson City, NV 89706 genetic facilities Phone: (775) 684-4285; Fax: (775) 684-4245 Other sources: physician reports E-mail: [email protected]

Case Ascertainment Gloria M. Deyhle, RN, BA Conditions warranting chart review in newborn period: Health Program Sepcialist any chart with a ICD9-CM code 740-759, any chart with Nevada State Health Division a selected list of ICD9-CM codes outside 740-759, any 3427 Goni Road, Suite 108 chart with selected defects or medical conditions ie Carson City, NV 89706 abnormal facies, congenital heart disease, any birth Phone: (775) 684-4243; Fax: (775) 684-4245 certiﬁcate with a birth defect box checked E-mail: [email protected] Conditions warranting a chart review beyond the newborn period: facial dysmorphism or abnormal facies, CNS condition (ie seizure), GI condition (ie intestinal blockage), GU condition (ie recurrent infections), cardiovascular condition, any infant with a codable defect Coding: ICD-9-CM

Data Collected Infant/fetus: identiﬁcation information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), birth measurements (weight,

Birth Defects Research (Part A) 70:609–676 (2004) 650 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY New Hampshire New Hampshire Birth Conditions Program (NHBCP)

Purpose: surveillance, research, service, prevention Data Collected Partner: university, hospital, child program, advocacy, Infant/fetus: identification information (name, address, legislator date-of-birth, etc.), demographic information Program status: Currently collecting data (race/ethnicity, sex, etc.), birth defect diagnostic Start year: 2003 information Earliest year of available data: 2003 Mother: identification information (name, address, date- Organizational location: Department of Health of-birth, etc.), demographic information (race/ethnicity, (Maternal and Child Health), Bureau of Vital Records: sex, etc.), gravidity/parity, prenatal diagnostic Bureau of Special Medical Services: Bureau of Nutrition information and Health Promotion, University Population covered annually: 13,560 Data Collection Methods and Storage Statewide: No: Currently collecting data at Dartmouth Database storage/management: Oracle, The AURIS web- Hitchcock Medical Center, New Hampshire’s primary based reporting system, currently utilized by NH tertiary center for obstetrical and neonatal care. Work is newborn hearing screening program, is being expanded underway to begin data collection in all birth hospitals. to meet the birth defects tracking requirements. Current legislation or rule: Currently working toward a legislative rules revision that would include birth defects. Data Analysis Data analysis software: SPSS, SAS, MS Access, STATA Case Definition Quality assurance: validity checks, re-abstraction of cases, double-checking of assigned codes, comparison/ Outcomes covered: Major birth defects and genetic verification between multiple data sources, clinical diseases review Pregnancy outcome: live births (all gestational ages and Data use and analysis: Data collection began at one birth weights), fetal deaths—stillbirths, spontaneous hospital in 2003 and so no data use or analysis occurred abortions, etc. (20 weeks gestation and greater), elective in the past 12 months. terminations Ͼ Age: Fetuses 20 weeks gestation and newborns/infants System Integration up to 1 year of age. System links: Not at this time Residence: All New Hampshire residents, those born in- System integration: Not at this time state as well as out of state. Funding Surveillance methods Funding source: CDC grant 100% Case ascertainment: active case ascertainment and population- based Other Case finding/identification sources: Web site: Not as of 1/2004 Delivery hospitals: discharge summaries, Medical Surveillance reports on file: Not at this time records abstraction of charts of selected ICD 9 Codes Pediatric & tertiary care hospitals: discharge Contact(s) summaries, ICU/NICU logs or charts, specialty John B. Moeschler, MD outpatient clinics, cytogenetics laboratory, perinatal Project Director pathology logs, Medical Genetics Clinic files, molecular Division of Genetics and Child Development, genetics laboratory, Prenatal Diagnosis Program files Dept. of Pediatrics Other specialty facilities: prenatal diagnostic facilities Dartmouth Hitchcock Medical Center (ultrasound, etc.), cytogenetic laboratories, genetic 1 Medical Center Drive counseling/clinical genetic facilities, maternal serum Lebanon, NH 03756 screening facilities Phone: 603-653-6053; Fax: 603-650-8268 E-mail: [email protected] Case Ascertainment Victoria A. Flanagan, BSN, MS Conditions warranting chart review in newborn period: Regional Program for Women’s and Children’s Health, any chart with a ICD9-CM code 740-759, any chart with Dartmouth Hitchcock Medical Center a selected list of ICD9-CM codes outside 740-759, any 1 Medical Center Drive chart with a CDC/BPA code, any chart with selected Lebanon, NH 03756 defects or medical conditions ie abnormal facies, Phone: 603-650-6137; Fax: 603-650-3434 congenital heart disease, all stillborn infants, all infants E-mail: victoria.a.fl[email protected] in NICU or special care nursery, all prenatal diagnosed or suspected cases Conditions warranting a chart review beyond the newborn period: facial dysmorphism or abnormal facies, cardiovascular condition, any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 651 New Jersey Special Child Health Services Registry (SCHS REGISTRY)

Purpose: surveillance, research, service, prevention Other specialty facilities: cytogenetic laboratories, Partner: Department of Health, university, hospital, genetic counseling/clinical genetic facilities environment, child program, advocacy, legislator Other sources: M.D. reports, Special Child Health Program status: Currently collecting data Services county based Case Management units, parents, Start year: 1928 schools, medical examiners Earliest year of available data: 1985 Organizational location: Department of Health & Senior Case Ascertainment Services - Special Child, Adult, and Early Intervention Conditions warranting chart review in newborn Services period: any chart with a ICD9-CM code 740-759, any Population covered annually: 114,500 chart with a selected list of ICD9-CM codes outside Statewide: yes 740-759, all neonatal deaths, all death certificates for Ͻ Current legislation or rule: NJSA 26:8 et seq., NJAC 8:20 1 year of age - Enacted 08-04-1983, with effective date of 03-04-1985. Conditions warranting a chart review beyond the Changes to legislation 1990, 1991, 1992. Readopted 05/ newborn period: GI condition (ie intestinal blockage), GU 2000. condition (ie recurrent infections), cardiovascular Legislation year enacted: 1983 condition, all infant deaths (excluding prematurity), ocular conditions, any infant with a codable defect Case Definition Coding: ICD-9-CM Outcomes covered: All birth defects, including structural, genetic, and biochemical are required to be reported. Data Collected While not mandated, all special needs and any condition Infant/fetus: identification information (name, address, which places a child at risk, eg. prematurity, asthma, date-of-birth, etc.), demographic information cancer, developmental delay, are also reported. (race/ethnicity, sex, etc.), birth measurements (weight, Pregnancy outcome: live births (all gestational ages & gestation, Apgars, etc.), birth defect diagnostic birth weights) information Age: mandated reporting of birth defects diagnosed Ͻϭ Mother: identification information (name, address, etc.) age 1, voluntary reporting of birth defects diagnosed Ͼ Father: identification information (name, address, etc.) age 1 and all children diagnosed with Special Needs conditions who are Ͻϭ 21 yrs. of age Data Collection Methods and Storage Residence: in/out NJ births to NJ res; Because of link Database storage/management: SAS with SCHS Case Management system, also enroll anyone becoming NJ res. Data Analysis Data analysis software: SAS, MS Access Surveillance methods Quality assurance: validity checks, double-checking of Case ascertainment: Passive, population-based reporting assigned codes, comparison/verification between system with annual quality assurance visits by BDR staff multiple data sources, data/hospital audits, clinical to birthing hospitals, birthing centers and, pediatric care review, timeliness, merge registry with birth certificate facilities. Medical chart review is conducted on all registry and the death certificate registry children registered with any of the defects eligible for Data use and analysis: routine statistical monitoring, participation in the NBDPS. baseline rates, rates by demographic and other variables, Case finding/identification sources: monitoring outbreaks and cluster investigations, time- Vital records: birth certificates, death certificates, space cluster analyses, epidemiologic studies (using only matched birth/death file program data), identification of potential cases for other Other state based registries: programs for children with epidemiologic studies, needs assessment, service special needs, newborn hearing screening program, delivery, referral, grant proposals, education/public newborn biochemical screening program, AIDS/HIV awareness, prevention projects registry Delivery hospitals: disease index or discharge index, System Integration discharge summaries, obstetrics logs (i.e., labor & System links: state registry, final birth file delivery), regular nursery logs, ICU/NICU logs or System integration: hearing screening registry provides charts, pediatric logs, postmortem/pathology logs, direct feed into SCHS Registry. surgery logs, cardiac catheterization laboratories, specialty outpatient clinics, quality Assurance visit Funding consisting of chart review of 3 month period Funding source: MCH funds 85%, genetic screening Pediatric & tertiary care hospitals: disease index or revenues 5%, CDC grant 10% discharge index, discharge summaries, ICU/NICU logs or charts, pediatric logs, postmortem/pathology logs, Other surgery logs, laboratory logs, cardiac catheterization Web site: http://www.state.nj.us/health/fhs/scregis.htm laboratories, specialty outpatient clinics, quality Surveillance reports on file: Special Child Health Services Assurance visit consisting of chart review of 3 m period Registry 1985-1989; Special Child Health Services Midwifery facilities: Yes Registry 1985-1991; Special Child Health Services

Birth Defects Research (Part A) 70:609–676 (2004) 652 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Registry 1985-1994; Special Child Health Services Registry 1990-1999 (in press). Procedure manual available: yes Additional information on ﬁle: Information sheet, case record form, copy of legislation, quality assurance audit information

Contact(s) Leslie M. Beres, MS Hyg Program Manager New Jersey Department of Health and Senior Services PO Box 364 Trenton, NJ 08625-0364 Phone: 609-292-5676; Fax: 609-633-7820 E-mail: [email protected]

Mary M. Knapp, MSN New Jersey Coordinator New Jersey Department of Health and Senior Services PO 364 Trenton, NJ 08625-0364 Phone: 609-292-5676; Fax: 609-633-7820 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 653 New Mexico New Mexico Birth Defects Prevention And Surveillance System (NM BDPASS)

Purpose: surveillance, research, service, prevention of-birth, etc.), demographic information (race/ethnicity, Partner: university, hospital, child program, legislature sex, etc.) Program status: Currently collecting data Father: identification information (name, address, date- Start year: 1995 of-birth, etc.), demographic information (race/ethnicity, Earliest year of available data: 1995 sex, etc.) Organizational location: Department of Health (Maternal and Child Health) Data Collection Methods and Storage Population covered annually: 27,000 Database storage/management: MS Access Statewide: yes Current legislation or rule: In January 2000, birth defects Data Analysis became a reportable condition. These conditions are Data analysis software: SAS updated by the Office of Epidemiology. This did not Quality assurance: validity checks, reabstraction of cases, involve legislation, only a change in regulations. double-checking of assigned codes, Legislation year enacted: January 1, 2000 comparison/verification between multiple data sources Data use and analysis: routine statistical monitoring, Case Definition baseline rates, rates by demographic and other variables, Outcomes covered: 740-760.71 grant proposals, education/public awareness, prevention Pregnancy outcome: live births (all gestational ages and projects; Mar03-Mar04 NM BDPASS did not have birth weights); fetal deaths and terminations included in epidemiology staff; prevention teams developed teaching NTD counts modules. Age: birth through age 14 years Residence: In state births to New Mexico residents (2001 System Integration definition: previous years included out-of-state births to System links: state registry, final birth file NM residents) System integration: Currently, BDPASS is integrated with the Children’s Chronic Conditions Register. Surveillance methods Case ascertainment: combination of active and passive, Funding population-based Funding source: general state funds 16%, MCH funds Case finding/identification sources: 25%, CDC grant 59% Vital records: birth certificates Other state based registries: Children and Youth with Other Special Health Care Needs, Children’s Chronic Web site: www.health.state.nm.us Conditions Registry Surveillance reports on file: Birth Defects in New Mexico Delivery hospitals: medical record chart review 1997-1998; Birth Defects in New Mexico 1995-1999 Pediatric & tertiary care hospitals: specialty outpatient clinics, including neurosurgery and plastic surgery Contact(s) Midwifery facilities: Yes Susan Nalder, EdD, MPH, CNM Third party payers: Medicaid databases, health MCH Epi Program Manager maintenance organizations (HMOs), Indian Health NM Dept. of Health Services, Children’s Medical Services (CMS) 2040 S. Pacheco Other specialty facilities: prenatal diagnostic facilities Santa Fe, NM 87505 (ultrasound, etc.), genetic counseling/clinical genetic Phone: 505-476-8889; Fax: 505-476-8898 facilities E-mail: [email protected] Other sources: physician reports Tierney Murphy, MD, MPH Case Ascertainment CSTE-MCH Fellow, Mar2004-06 NM Dept of Health Conditions warranting chart review in newborn period: 2040 South Pacheco any chart with a ICD9-CM code 740-759 and 760.71, any Santa Fe, NM 87505 birth certificate with a birth defect box checked, all Phone: 505-476-8918; Fax: 505-476-8898 prenatal diagnosed or suspected cases, any chart with a E-mail: [email protected] list of other ICD9-CM codes selected by CMS Conditions warranting a chart review beyond the newborn period: same as above Coding: ICD-9-CM

Birth Defects Research (Part A) 70:609–676 (2004) 654 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY New York New York State Congenital Malformations Registry (CMR)

Purpose: surveillance, research, service, prevention assigned codes, comparison/verification between Partner: university, hospital, child program, March Of multiple data sources, data/hospital audits Dimes Data use and analysis: routine statistical monitoring, Program status: Currently collecting data baseline rates, rates by demographic and other variables, Start year: 1982 monitoring outbreaks and cluster investigations, time Earliest year of available data: 1983 trends, time-space cluster analyses, capture-recapture Organizational location: Department of Health analyses, observed vs expected analyses, epidemiologic (Epidemiology/Environment) studies (using only program data), identification of Population covered annually: 260,000 potential cases for other epidemiologic studies, needs Statewide: yes assessment, service delivery, grant proposals, education/ Current legislation or rule: Public Health Law Art. 2, public awareness, prevention projects Title, II, Sect 225(5)(t) and Art. 2 Title I, sect 206(1)(j): Codes, Rules and Regulations,Chap 1, State Sanitary System Integration Code, part 22.3 System links: state registry, final birth file, Statewide Legislation year enacted: 1982 Hospital Discharge Database (SPARCS)

Case Definition Funding Outcomes covered: Major malformations, detailed list Funding source: general state funds 12%, MCH funds available upon request. 27%, CDC grant 37%, other federal funding 24% Pregnancy outcome: live births (all gestational ages and Other birth weights) Age: 2 years Web site: http://www.health.state.ny.us/nysdoh/cmr/ Residence: In-state and out-of-state birth to state resident; cmrhome.htm in-state birth to nonresident; all children born in or Surveillance reports on file: Reports for 1983-1997. residing in New York, up to age 2. Procedure manual available: yes Contact(s) Surveillance methods Philip K. Cross, BS Case ascertainment: combination of active and passive Director, Congenital Malformations Registry case ascertainment, population New York Department of Health Case finding/identification sources: Flanigan Square, Room 200; 547 River Street Delivery hospitals: disease index or discharge index, Troy, NY 12180 ICU/NICU logs or charts Phone: 518-402-7990; Fax: 518-402-7959 Pediatric & tertiary care hospitals: disease index or E-mail: [email protected] discharge index, ICU/NICU logs or charts Other sources: physician reports, hospital discharge data Charlotte Druschel, MD, MPH Medical Director, Center for Environmental Health Case Ascertainment New York Department of Health Conditions warranting chart review in newborn period: Flanigan Square, Room 200; 547 River Street charts with selected ICD-9CM codes in the 740-759 Troy, NY 12180 Coding: CDC coding system based on BPA, ICD-9-CM Phone: 518-402-7990; Fax: 518-402-7959 E-mail: [email protected] 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, birth defect diagnostic information Mother: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.) Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Database storage/management: MS Access, FoxPro, Sybase

Data Analysis Data analysis software: SAS, MS Access, Visual FoxPro Quality assurance: validity checks, double-checking of

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 655 North Carolina North Carolina Birth Defects Monitoring Program (NCBDMP)

Purpose: surveillance, research, service, prevention, sex, etc.), gravidity/parity, illnesses/conditions, prenatal Education, Advocacy care, prenatal diagnostic information, Partner: Department of Health, university, hospital, child pregnancy/delivery complications program, advocacy, legislator Father: identification information (name, address, date- Program status: Currently collecting data of-birth, etc.), demographic information (race/ethnicity, Start year: 1987 sex, etc.) Earliest year of available data: 1989 Organizational location: Department of Health (Vital Data Collection Methods and Storage Statistics) Database storage/management: MS Access, Mainframe Population covered annually: 118,000 Statewide: yes Data Analysis Current legislation or rule: NCGS 130A-131 Data analysis software: SAS, MS Access Legislation year enacted: 1995 Quality assurance: validity checks, re-abstraction of cases, double-checking of assigned codes, comparison/ Case Definition verification between multiple data sources, clinical Outcomes covered: Major birth defects review, timeliness Pregnancy outcome: live births (all gestational ages and Data use and analysis: routine statistical monitoring, birth weights), fetal deaths—stillbirths, spontaneous baseline rates, rates by demographic and other variables, abortions, etc. (20 weeks gestation and greater), elective monitoring outbreaks and cluster investigations, time terminations trends, capture-recapture analyses, observed vs expected Age: Up to one year after delivery analyses, epidemiologic studies (using only program Residence: NC resident births, in-state and out-of-state data), identification of potential cases for other occurrence epidemiologic studies, needs assessment, service delivery, referral, grant proposals, education/public Surveillance methods awareness, prevention projects, advocacy Case ascertainment: Population-based, active ascertainment System Integration Case finding/identification sources: System links: state registry, final birth file, Vital Vital records: birth certificates, death certificates, Statistics, Medicaid Paid Claims, MCH Program Data matched birth/death file, fetal death certificates Other state based registries: programs for children with Funding special needs Funding source: general state funds 55%, CDC grant 45% Delivery hospitals: disease index or discharge index, discharge summaries, obstetrics logs (i.e., labor & Other delivery) Web site: www.schs.state.nc.us/SCHS Pediatric & tertiary care hospitals: disease index or Surveillance reports on file: Annual reports, Special discharge index, discharge summaries studies Third party payers: Medicaid databases Other specialty facilities: prenatal diagnostic facilities Contact(s) (ultrasound, etc.), genetic counseling/clinical genetic Robert E. Meyer, PhD facilities NCBDMP Director North Carolina Center for Health Statistics 1908 Mail Service Center Case Ascertainment Raleigh, NC 27699-1908 Conditions warranting chart review in newborn period: Phone: 919.715.4476; Fax: 919.733.8485 any chart with a ICD9-CM code 740-759, any chart with E-mail: [email protected] a selected list of ICD9-CM codes outside 740-759, any chart with selected procedure codes, any birth certificate Jennifer Williams with a birth defect box checked, all stillborn infants, all Field Supervisor prenatal diagnosed or suspected cases North Carolina Center for Health Statistics Conditions warranting a chart review beyond the 1908 Mail Service Center newborn period: any infant with a codable defect Raleigh, NC 27699-1908 Coding: CDC coding system based on BPA Phone: 919.733-4728; Fax: 919.733.8485 E-mail: [email protected] 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,

Birth Defects Research (Part A) 70:609–676 (2004) 656 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY North Dakota North Dakota Birth Defects Monitoring System (NDBDMS)

Purpose: surveillance gestation, Apgars, etc.), tests and procedures, infant Partner: university, March of Dimes complications, birth defect diagnostic information Program status: Currently collecting data Mother: identiﬁcation information (name, address, date- Start year: 2002 of-birth, etc.), demographic information (race/ethnicity, Earliest year of available data: 1994 sex, etc.), gravidity/parity, illnesses/conditions, prenatal Organizational location: Department of Health (Vital care, prenatal diagnostic information, Statistics), Department of Health (Maternal and Child pregnancy/delivery complications, family history Health), ND Department of Human Services (Children’s Father: identiﬁcation information (name, address, date- Special Health Services) of-birth, etc.), demographic information (race/ethnicity, Population covered annually: 7676 sex, etc.) Statewide: yes Current legislation or rule: North Dakota Centry code Data Collection Methods and Storage 50-10 Database storage/management: MS Access, Mainframe, Legislation year enacted: N/A Db2, SPSS, Excel

Data Analysis Case Definition Data analysis software: SPSS Outcomes covered: Selected birth defects (NTDs, Quality assurance: comparison/verification between congenital heart defects, cleft lip and palate, multiple data sources, clinical review chromosomal anomalies) and other risk factors that may Data use and analysis: routine statistical monitoring, lead to health and developmental problems. baseline rates, rates by demographic and other variables, Pregnancy outcome: live births (all gestational ages and time trends, needs assessment, service delivery, referral, birth weights, numbers collected and reported via Vital grant proposals, education/public awareness, prevention Records), fetal deaths—stillbirths, spontaneous abortions, projects etc. (20 weeks gestation and greater, numbers collected and reported via Vital Records), elective terminations (less than 20 week gestation, 20 weeks gestation and Funding greater) Funding source: SSDI Grant Age: Newborn period Residence: In-state resident births and out of state birth Other receiving services in ND Web site: www.health.state.nd.us/ndhd/admin/vital/ Procedure manual available: yes Surveillance methods Case ascertainment: passive Contact(s) Case finding/identification sources: Terry Bohn Vital records: birth certificates, death certificates, SSDI Coordinator matched birth/death file, fetal death certificates Childern’s Special Health Services Division ND Other state based registries: programs for children with Department of Human Services special needs, newborn hearing screening program, 600 East Boulevard Avenue, Dept. 301 newborn biochemical screening program, cancer registry, Bismarck, ND 58505-0200 AIDS/HIV registry, FAS Phone: 701-328-4963; Fax: 701-328-1412 Delivery hospitals: Birth certificate completion E-mail: [email protected] Pediatric & tertiary care hospitals: specialty outpatient clinics Third party payers: Medicaid databases, health maintenance organizations (HMOs), private insurers Other specialty facilities: genetic counseling/clinical genetic facilities Other sources: physician reports

Case Ascertainment Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, any chart with selected defects or medical conditions ie abnormal facies, congenital heart disease, any birth certiﬁcate with a birth defect box checked Coding: ICD-9-CM, ICD 10

Data Collected Infant/fetus: identiﬁcation information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), birth measurements (weight,

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 657 Ohio Ohio Connections For Children With Special Needs (OCCSN)

Purpose: surveillance, research, service, prevention Partner: Department of Health, university, hospital, child program, advocacy, legislator Program status: Program has not started collecting data yet Start year: 2004 Earliest year of available data: N/A Organizational location: Department of Health (Maternal and Child Health) Population covered annually: System in development Statewide: No: System in development Current legislation or rule: Ohio House Bill 534 signed into law in July, 2000. “The Director of Health shall establish and, if funds for this purpose are available, implement a statewide birth defects information system for the collection of information concerning congenital anomal Legislation year enacted: 2000

Case Deﬁnition Outcomes covered: System in development

Surveillance methods Case ascertainment: System in development

Funding Funding source: CDC grant 100%

Contact(s) David P. Schor, MD, MPH, FAAP Chief, Division of Family and Community Health Services Ohio Department of Health 246 N. High Street Columbus, OH 43216-0118 Phone: 614-466-1663; Fax: 614-728-9163 E-mail: [email protected]

Anna E. Starr, BS Genetics Section Administrator Ohio Dept. of Health 246 N. High Street Columbus, OH 43215 Phone: 614-995-5333; Fax: 614-564-2424 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 658 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Oklahoma Oklahoma Birth Defects Registry (OBDR)

Purpose: surveillance, prevention of-birth, etc.), demographic information (race/ethnicity, Partner: hospital, Cytogenetics/ & Medical Genetics sex, etc.), family history Program status: Currently collecting data Start year: -1992; statewide 1994 Data Collection Methods and Storage Earliest year of available data: 1992 Database storage/management: MS Access Organizational location: Department of Health (Family Health Services) Data Analysis Population covered annually: 50,000 Data analysis software: SAS, MS Access, ArcView GIS Statewide: yes Quality assurance: validity checks, re-abstraction of Current legislation or rule: 63 O.S. Section 1-550.2 cases, double-checking of assigned codes, timeliness, Legislation year enacted: 1992 Editing of all completed abstracts Data use and analysis: routine statistical monitoring, Case Deﬁnition baseline rates, rates by demographic and other variables, Outcomes covered: modiﬁed 6-digit ICD-9-CM codes for monitoring outbreaks and cluster investigations, time- birth defects and genetic diseases space cluster analyses, needs assessment, referral, grant Pregnancy outcome: live births (Ͼϭ 20 weeks gestation), proposals, education/public awareness, prevention fetal deaths—stillbirths, spontaneous abortions, etc. (20 projects, Program quality assurance weeks gestation and greater), elective terminations (20 System Integration weeks gestation and greater) Age: 2 years System links: 9/2003 awarded Environmental Public Residence: In-state births to state residents Health Tracking Grant to link health outcomes & environmental contamination data - in planning stages.

Surveillance methods Funding Case ascertainment: population based, active case Funding source: general state funds 10%, MCH funds ascertainment 50%, CDC grant 40% Case finding/identification sources: Vital records: birth certificates, death certificates, fetal Other death certificates Surveillance reports on file: 1992 & 1993 Annual Report - Delivery hospitals: disease index or discharge index, combined for Oklahoma, Tulsa and Cleveland Counties obstetrics logs (i.e., labor & delivery), regular nursery 1994-1998 Annual Report logs, ICU/NICU logs or charts, pediatric logs, surgery Procedure manual available: yes logs, specialty outpatient clinics Additional information on file: PRAMS Gram Vol 8 No Pediatric & tertiary care hospitals: disease index or 3: Folic Acid Knowledge and Multivitamin Use Among discharge index, pediatric logs, surgery logs, specialty Oklahoma Women; provisional rate tables for 1994-1997. outpatient clinics Comments: Statewide data collection began in 1994. Third party payers: Indian health services, Military Additional information for case definitions residence: hospitals delivering babies 1995 began abstraction of Oklahoma residents born in Other specialty facilities: prenatal diagnostic facilities Fort Smith, Arkansas. (ultrasound, etc.), cytogenetic laboratories, genetic counseling/clinical genetic facilities Contact(s) Kay A. Pearson, MS Case Ascertainment Oklahoma Birth Defects Registry Coordinator Conditions warranting chart review in newborn period: Oklahoma State Department of Health; Screening, any chart with a ICD9-CM code 740-759, any chart with Special Services & SoonerStart a selected list of ICD9-CM codes outside 740-759, any 1000 NE 10th Street, Room 710 chart with a CDC/BPA code Oklahoma City, OK 73117-1299 Conditions warranting a chart review beyond the Phone: 405-271-9444 Ex 56744; Fax: 405-271-4892 newborn period: any infant with a codable defect E-mail: [email protected] 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.), 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, family history Father: identification information (name, address, date-

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 659 Oregon

Program status: No surveillance program

Contact(s) Kenneth D. Rosenberg, MD, MPH MCH Epidemiologist Oregon Health Department 800 NE Oregon Street #21, Suite 850 Portland, OR 97232 Phone: 503-731-4507; Fax: 503-731-4083 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 660 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Pennsylvania Pennsylvania Follow-Up, Outreach, Referral And Education For Families (PA FORE FAMILIES)

Purpose: surveillance, service Data Analysis Partner: university, hospital, nursing, advocacy Data analysis software: SAS, MS Access Program status: Program has not started collecting data Quality assurance: validity checks, yet comparison/verification between multiple data sources Start year: 2003 Data use and analysis: routine statistical monitoring, Earliest year of available data: 2003, statewide matched baseline rates, rates by demographic and other variables, data file being collected needs assessment, service delivery, referral, grant Organizational location: Department of Health proposals, education/public awareness, prevention (Maternal and Child Health) projects Population covered annually: 142,380 resident live births in 2002. Funding Statewide: yes Funding source: MCH funds 100% Current legislation or rule: Not applicable Other Case Definition Comments: Pennsylvania has developed a PA FORE Outcomes covered: 740-759.9 and 760.71 ICD-9 Families Handbook that contains general information Pregnancy outcome: live births (all gestational ages and about how parents and caregivers of children with birth weights) special needs can access free or low cost insurance Age: birth to 24 months of age coverage and specialized support services. Residence: in-state births to state residents Contact(s) Surveillance methods Steven B. Horner, MS Case ascertainment: population-based, passive Public Health Program Administrator Case finding/identification sources: Pennsylvania Department of Health Vital records: birth certificates, death certificates, P.O. Box 90, 7th floor East Wing, Health & Welfare Bldg. matched birth/death file, Hospital discharge data Harrisburg, PA 17108 collected by the Pennsylvania Health Care Cost Phone: 717-783-8143; Fax: 717-772-0323 Containment Council—(PHC4—a state agency). E-mail: [email protected] Other state based registries: programs for children with special needs, newborn hearing screening program, Robert F. Staver, MPA newborn biochemical screening program, Those checked Program Manager above will eventually be linked. PA Department of Health Delivery hospitals: discharge summaries, PHC4 data is P.O. Box 90, 7th floor East Wing, Health & Welfare Bldg. based on hospital discharge summaries Harrisburg, PA 17108 Pediatric & tertiary care hospitals: discharge Phone: (717) 783-8143; Fax: (717) 705-9286 summaries, PHC4 data is based on hospital discharge E-mail: [email protected] summaries Other specialty facilities: genetic counseling/clinical genetic facilities

Case Ascertainment Coding: ICD-9-CM, Limited to ICD9-CM 740-759.9 and 760.71.

Data Collected Infant/fetus: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), 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.), illnesses/conditions, family history

Data Collection Methods and Storage Database storage/management: MS Access, Mainframe

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 661 Puerto Rico Puerto Rico Folic Acid Campaign And Birth Defects Surveillance System (PRFAC/BDSS)

Purpose: surveillance, research, service, prevention Data Collected Partner: Department of Health, university, nursing, child Infant/fetus: identification information (name, address, program, advocacy date-of-birth, etc.), demographic information Program status: Currently collecting data (race/ethnicity, sex, etc.), birth measurements (weight, Start year: 1995 gestation, Apgars, etc.), tests and procedures, infant Earliest year of available data: 1995 complications, birth defect diagnostic information Organizational location: Division of Children with Mother: identification information (name, address, date- Special Health Care Needs of-birth, etc.), demographic information (race/ethnicity, Population covered annually: 56,000 sex, etc.), gravidity/parity, illnesses/conditions, prenatal Statewide: yes care, prenatal diagnostic information, Current legislation or rule: No pregnancy/delivery complications Father: identification information (name, address, date- Case Definition of-birth, etc.), demographic information (race/ethnicity, Outcomes covered: Neural Tube Defects (Anencephaly, sex, etc.) Encephalocele, Myelomeningocele and Meningocele), Cleft Lip and/or Cleft Palate, Gastroschisis, Club Foot, Data Collection Methods and Storage Limb reduction defects, Down Syndrome, Omphalocele, Database storage/management: MS Access Ambiguous Genitalia, Trisomy 13, Trisomy 18, Conjoints Twins, Albinism and Congenital Heart Defects. Data Analysis Pregnancy outcome: live births (all gestational ages and Data analysis software: SPSS, MS Access, Excel birth weights), fetal deaths—stillbirths, spontaneous Quality assurance: validity checks, re-abstraction of abortions, etc. (less than 20 week gestation, 20 weeks cases, double-checking of assigned codes, comparison/ gestation and greater), elective terminations verification between multiple data sources, clinical Age: up to 6 years after delivery review, timeliness Residence: In state birth to state residents Data use and analysis: routine statistical monitoring, baseline rates, rates by demographic and other variables, Surveillance methods time trends, needs assessment, referral, grant proposals, Case ascertainment: Active case ascertainment and education/public awareness, prevention projects population- based Case finding/identification sources: Funding Vital records: birth certificates, death certificates, Funding source: general state funds 3%, MCH funds 38%, matched birth/death file, fetal death certificates CDC grant 52%, other federal funding 10%, CDC Other state based registries: programs for children with Visiting Fellowship Program special needs, newborn hearing screening program, cancer registry, AIDS/HIV registry Other Delivery hospitals: disease index or discharge index, Web site: http://www.salud.gov.pr/AF/AFindex.htm obstetrics logs (i.e., labor & delivery), regular nursery Surveillance reports on file: Description of Registry logs, ICU/NICU logs or charts, pediatric logs, Development, Case Report Form, manual for case report postmortem/pathology logs, surgery logs, specialty form, outpatient clinics Procedure manual available: yes Pediatric & tertiary care hospitals: ICU/NICU logs or charts, pediatric logs, surgery logs, laboratory logs Contact(s) Third party payers: Medicaid databases, health Elia M. Correa, RN, MPH maintenance organizations (HMOs) Coordinator Other specialty facilities: prenatal diagnostic facilities Puerto Rico Folic Acid Campaign (ultrasound, etc.), genetic counseling/clinical genetic Birth Defects Surveillance System facilities PR Department of Health Other sources: physician reports PO Box 70184 San Juan, PR 00936 Case Ascertainment Phone: 787-751-3654; Fax: 787-764-4259 Conditions warranting chart review in newborn period: E-mail: [email protected] any chart with a ICD9-CM code 740-759, any chart with selected defects or medical conditions ie abnormal facies, Diana Valencia, MS, GC congenital heart disease, any birth certificate with a birth Genetic Counselor defect box checked, all elective abortions, all infants in Puerto Rico Folic Acid Campaign NICU or special care nursery, all prenatal diagnosed or Birth Defects Surveillance System suspected cases PR Department of Health Conditions warranting a chart review beyond the PO Box 70184 newborn period: failure to thrive, cardiovascular San Juan, PR 00936 condition, any infant with a codable defect Phone: 787-274-5671; Fax: 787-764-4259 Coding: ICD-9-CM E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 662 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Rhode Island Rhode Island Birth Defects Surveillance Program

Purpose: surveillance, service, prevention Mother: identification information (name, address, date- Partner: hospital, child program, advocacy of-birth, etc.), demographic information (race/ethnicity, Program status: Currently collecting data sex, etc.), gravidity/parity, illnesses/conditions, prenatal Start year: 2000 care, pregnancy/delivery complications, family history Earliest year of available data: 1997 Father: identification information (name, address, date- Organizational location: Department of Health of-birth, etc.), demographic information (race/ethnicity, (Maternal and Child Health) sex, etc.) Population covered annually: 12,500 Statewide: yes Data Collection Methods and Storage Current legislation or rule: Title 23, Chapter 13.3 of Database storage/management: MS Access, Oracle Rhode Island General Laws requires the development of a birth defects surveillance, reporting and information Data Analysis system that will: a) describe the occurrence of birth Data analysis software: SAS, MS Access defects in children up to age five; b) detect trends of Quality assurance: validity checks, double-checking of morbidity and mortality; and c) identify newborns and assigned codes, comparison/verification between children with birth defects to intervene on a timely basis multiple data sources, data/hospital audits, clinical for treatment. review Legislation year enacted: 2003 Data use and analysis: routine statistical monitoring, baseline rates, rates by demographic and other variables, Case Definition time trends, needs assessment, service delivery, referral, Outcomes covered: major birth defects and genetic grant proposals, education/public awareness diseases System Integration Pregnancy outcome: live births (all gestational ages and birth weights) System links: state registry, KIDSNET (Universal Age: Currently at birth Newborn Developmental Risk Screening; Universal Residence: RI residents Newborn Hearing; Newborn Bloodspot Screening; Early Intervention; Immunization; Lead Poisoning; WIC; Home Surveillance methods Visiting; and Vital Records); hospital discharge database Case ascertainment: Currently, passive case Funding ascertainment Funding source: MCH funds 60%, CDC grant 40%, Note: Case finding/identification sources: ϭ Vital records: birth certificates, death certificates, CDC Grant no cost extension $ from birth defects matched birth/death file surveillance grant Other state based registries: programs for children with Contact(s) special needs, newborn hearing screening program, newborn biochemical screening program, RI has an Samara Viner-Brown, MS integrated database called KIDS NET, which links data Chief of Data & Evaluation from 9 programs including: Universal Newborn Rhode Island Department of Health Developmental Risk Screening; Universal Newborn 3 Capitol Hill, Room 302 Hearing; Newborn Bloodspot Screening; Early Providence, RI 02908-5097 Intervention; Immunization; Lead Poisoning; WIC; Home Phone: 401-222-5935; Fax: 401-222-1442 Visiting and Vital Records E-mail: [email protected] Delivery hospitals: discharge summaries, ICU/NICU logs or charts Michele Quaedvlieg, AS Pediatric & tertiary care hospitals: specialty outpatient Data Manager clinics Rhode Island Department of Health Other specialty facilities: genetic counseling/clinical 3 Capitol Hill, Room 302 genetic facilities Providence, RI 02908-5097 Phone: 401-222-4631; Fax: 401-222-1442 E-mail: [email protected] Case Ascertainment Conditions warranting chart review in newborn period: Chart reviews are conducted for every newborn identified with a birth defect. Coding: ICD-9-CM

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 663 South Carolina South Carolina Birth Defects Surveillance And Prevention Program

Purpose: surveillance, research, service of-birth, etc.), demographic information (race/ethnicity, Partner: Department of Health, university, hospital sex, etc.), illnesses/conditions, family history Program status: Currently collecting data Start year: 1992 Data Collection Methods and Storage Earliest year of available data: 1993 Database storage/management: MS Access Organizational location: Greenwood Genetic Center Population covered annually: 55,873 Data Analysis Statewide: yes Data analysis software: SAS, MS Access Quality assurance: validity checks, re-abstraction of Case Definition cases, double-checking of assigned codes, comparison/ Outcomes covered: Neural Tube Defects verification between multiple data sources, clinical Pregnancy outcome: live births (all gestational ages and review birth weights), fetal deaths—stillbirths, spontaneous Data use and analysis: routine statistical monitoring, abortions, etc. (less than 20 week gestation, 20 weeks baseline rates, rates by demographic and other variables, gestation and greater), elective terminations (less than 20 time trends, epidemiologic studies (using only program week gestation, 20 weeks gestation and greater) data), identification of potential cases for other Age: Up to one year after delivery epidemiologic studies, needs assessment, grant Residence: In and out of state births to residents of South proposals, education/public awareness, prevention Carolina projects Funding Surveillance methods Funding source: general state funds 35%, CDC grant 20%, Case ascertainment: Combination of active and passive other federal funding 35%, March of Dimes 10% case ascertainment Case finding/identification sources: Other Vital records: birth certificates, death certificates, Web site: Http://www.ggc.org matched birth/death file, fetal death certificates, elective Procedure manual available: yes termination certificates Other state based registries: programs for children with Contact(s) special needs, Autopsy Roger E. Stevenson, MD Delivery hospitals: disease index or discharge index, Director: SC BD Surveillance & Prevention Program discharge summaries, postmortem/pathology logs, Greenwood Genetic Center specialty outpatient clinics, ICD-9 Codes 1 Gregor Mendel Circle Pediatric & tertiary care hospitals: discharge Greenwood, SC 29646 summaries, specialty outpatient clinics Phone: 864-941-8146 Fax: 864-388-1707 Other specialty facilities: prenatal diagnostic facilities E-mail: [email protected] (ultrasound, etc.), cytogenetic laboratories, genetic counseling/clinical genetic facilities, maternal serum Jane H. Dean, RN screening facilities Program Coordinator Other sources: physician reports Greenwood Genetic Center 1 Gregor Mendel Circle Case Ascertainment Greenwood, SC 29646 Conditions warranting chart review in newborn period: Phone: (864) 941-8138 Fax: (864) 388-1707 any chart with a ICD9-CM code 655.00-755.9 any chart E-mail: [email protected] with selected defects or medical conditions ie abnormal facies, congenital heart disease, limb reduction defects, all prenatal diagnosed or suspected cases Coding: ICD-9-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-

Birth Defects Research (Part A) 70:609–676 (2004) 664 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY South Dakota

Program status: No surveillance program

Contact(s) Quinn Stein, MS, CGC Genetic Counselor Sioux Valley Children’s Specialty Clinic 1305 W 18th St. Sioux Falls, SD 57117 Phone: 605-333-4298; Fax: 605-333-1585 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 665 Tennessee Tennessee Birth Defects Registry (TBDR)

Purpose: surveillance, research, service, prevention assigned codes, comparison/verification between Partner: hospital, child program, advocacy, legislator multiple data sources Program status: Currently collecting data Data use and analysis: routine statistical monitoring, Start year: 2000 baseline rates, rates by demographic and other variables, Earliest year of available data: 2000 monitoring outbreaks and cluster investigations, Organizational location: Department of Health observed vs expected analyses, needs assessment, service (Research) delivery, grant proposals, education/public awareness, Population covered annually: 80,000 prevention projects Statewide: yes Current legislation or rule: TCA 68-5-506 Funding Legislation year enacted: 2000 Funding source: general state funds 94%, private foundations 6% Case Definition Contact(s) Outcomes covered: Major Birth Defects Pregnancy outcome: live births (all gestational ages and David J. Law, PhD birth weights), fetal deaths—stillbirths, spontaneous Director, Tennessee Birth Defects Registry abortions, etc. (a fetal death 500 grams or more, or in the TN Dept. of Health - PPA absence of weight, of 22 completed weeks of gestation or 425 Fifth Avenue North, 4th Flr. more) Nashville, TN 37247 Residence: in and out state births to state resident Phone: 615-253-4702; Fax: 615-253-1688 E-mail: [email protected] Surveillance methods Case ascertainment: hospital records matched to vital records, population based Case finding/identification sources: Vital records: birth certificates, death certificates, matched birth/death file, fetal death certificates Other state based registries: newborn hearing screening program, newborn metabolic screening program Delivery hospitals: disease index or discharge index, discharge summaries Pediatric & tertiary care hospitals: disease index or discharge index, discharge summaries

Case Ascertainment Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, 760.71 Coding: ICD-9-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 Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Database storage/management: MS Access, SQL Server

Data Analysis Data analysis software: SAS, MS Access Quality assurance: validity checks, double-checking of

Birth Defects Research (Part A) 70:609–676 (2004) 666 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Texas Texas Birth Defects Monitoring Division (TBDMD)

Purpose: surveillance, research, service, prevention (race/ethnicity, sex, etc.), birth measurements (weight, Partner: university, hospital, advocacy gestation, Apgars, etc.), tests and procedures, infant Program status: Currently collecting data complications, birth defect diagnostic information Start year: 1994 Mother: identification information (name, address, date- Earliest year of available data: 1996 of-birth, etc.), demographic information (race/ethnicity, Organizational location: Department of Health sex, etc.), gravidity/parity, illnesses/conditions, prenatal (Epidemiology/Environment) diagnostic information, pregnancy/delivery Population covered annually: 365,000 complications, family history Statewide: yes Father: identification information (name, address, date-of- Current legislation or rule: Health and Safety Code, Title birth, etc.), demographic information (race/ethnicity, sex, etc.) 2, Subtitle D, Section 1, Chapter 87. Legislation year enacted: 1993 Data Collection Methods and Storage Database storage/management: SQL Server Case Definition Outcomes covered: All major structural birth defects and fetal alcohol syndrome Data Analysis Pregnancy outcome: live births (all gestational ages and Data analysis software: SPSS, SAS, MS Access birth weights), fetal deaths—stillbirths, spontaneous Quality assurance: validity checks, re-abstraction of abortions, etc. (less than 20 week gestation, 20 weeks cases, double-checking of assigned codes, clinical review, gestation and greater), elective terminations timeliness, re-casefinding, re-review of medical records Age: Up to one year after delivery - FAS up to 6 years Data use and analysis: baseline rates, rates by Residence: In-state births to state residents. demographic and other variables, monitoring outbreaks and cluster investigations, time trends, epidemiologic Surveillance methods studies (using only program data), identification of potential cases for other epidemiologic studies, referral, Case ascertainment: Active, population-based grant proposals, education/public awareness Case finding/identification sources: Delivery hospitals: disease index or discharge index, discharge summaries, obstetrics logs (i.e., labor & delivery), System Integration regular nursery logs, ICU/NICU logs or charts, pediatric logs, postmortem/ pathology logs, surgery logs, cardiac System links: Link registry to vital records for catheterization laboratories, specialty outpatient clinics, demographic data Genetics logs, stillbirth logs, radiology logs Pediatric & tertiary care hospitals: disease index or discharge index, discharge summaries, ICU/NICU logs Funding or charts, pediatric logs, postmortem/pathology logs, Funding source: general state funds 51%, MCH funds 33%, surgery logs, laboratory logs, cardiac catheterization Preventive Health block grant 16%, Note: does not include laboratories, specialty outpatient clinics, genetics logs, CDC-funded Texas Birth Defects Research Center funds radiology logs Midwifery facilities: Yes Other sources: licensed birthing centers Other Web site: http://www.tdh.state.tx.us/tbdmd/index.htm Surveillance reports on file: Report of Birth Defects Case Ascertainment Among 1995 Deliveries. 1996 Birth Defects in the Lower Conditions warranting chart review in newborn period: Rio Grande Valley. Report of Birth Defects Among 1996 any chart with a ICD9-CM code 740-759, any chart with a and 1997 Deliveries. Report of Birth Defects Among 1998 selected list of ICD9-CM codes outside 740-759, any chart and 1999 Deliveries, Among 1999 and 2000 Deliveries. with selected procedure codes, any chart with selected Procedure manual available: yes defects or medical conditions ie abnormal facies, congenital Additional information on file: copy of legislation; Texas heart disease, Ͻ34 weeks GA, all stillborn infants Birth Defects Monitoring Division fact sheet; Texas Conditions warranting a chart review beyond the Center for Birth Defects Research and Prevention fact newborn period: CNS condition (e.g. seizure), GI sheet; Fetal Alcohol Syndrome brochure (English and condition (e.g. intestinal blockage), GU condition (e.g. Spanish); Pregnancy Outcome Patterns for Various recurrent infections), cardiovascular condition, any infant Defects; Impact of Including Induced Pregnancy with a codable defect Terminations Before 20 Weeks Gestation on Birth Defect Coding: CDC coding system based on BPA Rates; Birth Defects Glossary; Recent Trends in Neural Tube Defects in Texas. Comments: Statewide as of 1999 deliveries. Until 2000, the Data Collected Texas Department of Health also had the Texas Neural Infant/fetus: identification information (name, address, Tube Defect Surveillance and Intervention Project along the date-of-birth, etc.), demographic information Texas border with Mexico, which conducted active

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 667 surveillance and research on neural tube defects for 14 counties.

Contact(s) Mark A. Canﬁeld, PhD Director Texas Birth Defects Monitoring Division 1100 West 49th Street Austin, TX 78756-3180 Phone: 512-458-7232; Fax: 512-458-7330 E-mail: mark.canﬁ[email protected]

Peter Langlois, PhD Senior Epidemiologist Texas Birth Defects Monitoring Division 1100 West 49th Street Austin, TX 78756-3180 Phone: 512-458-7232; Fax: 512-458-7330 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 668 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Utah Utah Birth Defect Network (UBDN)

Case Definition Data Collection Methods and Storage Outcomes covered: 742.000 - 759.000 Database storage/management: Microsoft Access 2000 Pregnancy outcome: live births (all gestational ages and birth weights), fetal deaths—stillbirths, spontaneous Data Analysis abortions, etc. (20 weeks gestation and greater), pregnancy Data analysis software: Epi2000, SAS, Microsoft Access, terminations (occuring at any gestational week) Statview Age: 2 Quality assurance: logiscal checks, duplicate check in Residence: Maternal residence in Utah at time of delivery tracking and surveillance module, case record form checked for completeness, comparison/verification Surveillance methods between multiple data sources, clinical review, timeliness Case ascertainment: Population-based combination of through system, manual review of subset of surveillance active/passive – all medical records are reviewed for all module case data compared to case record form. reported poential cases Data use and analysis: routine statistical monitoring, Case finding/identification sources: baseline rates, rates by demographic and other variables, Vital records: birth certificates, death certificates, fetal time trends, epidemiologic studies (using only program death certificates data), identification of potential cases for other Delivery hospitals: disease index or discharge index, epidemiologic studies, referral, grant proposals, discharge summaries, obstetrics logs (i.e., labor & education/public awareness, prevention projects, Oral delivery), newborn nursery logs, ICU/NICU logs or Facial Cleft Case-Control Study, and Utah Center for charts, postmortem/pathology logs, specialty outpatient Birth Defects Research and Prevention clinics, Champions report live births delivered at their respective hospitals Funding Pediatric & tertiary care hospitals: disease index or Funding source: MCH funds 50%, CDC grant 50% discharge index, discharge summaries, ICU/NICU logs or charts, postmortem/pathology logs, surgery logs, Other specialty outpatient clinics Web site: health.utah.gov/birthdefect Other specialty facilities: prenatal diagnostic facilities Surveillance reports on file: 1994 NTD Surveillance, 1994- (ultrasound, etc.), cytogenetic laboratories, genetic 1996 registry report counseling/clinical genetic facilities, physician reports, Procedure manual available: yes lay midwives Additional information on file: Data Sharing Protocol

Case Ascertainment Contact(s) Conditions warranting chart review in newborn period: Marcia Lynn Feldkamp, PA, MSPH any fetus or infant with a ICD9-CM code 740-759 Director suggesting an eligible birth defect, any chart with selected Utah Birth Defects Network defects or medical conditions (i.e. abnormal facies, 44 North Medical Dr/POBox 144697 congenital heart disease, any birth certificate with a birth Salt Lake City, UT 84114-4697 defect box checked, all stillborn infants with suggested Phone: 801-257-0566 ext 203; Fax: 801-257-0572 minor or major malformations), all neonatal deaths, all E-mail: [email protected] infants in NICU or special care nursery, all prenatal diagnosed or suspected cases, all fetal deaths certificates, Lynne Margaret MacLeod, M.Stat NICU reports, infant deaths are reviewed Surveillance Project Coordinator Conditions warranting a chart review beyond the Utah Birth Defects Network newborn period: any infant with a codable defect as 44 N Medical Drive/POBox 144697 listed above. Salt Lake City, UT 84114-4697 Coding: CDC coding system based on BPA Phone: 801-257-0566 ext 202; Fax: 801-257-0572 E-mail: [email protected] Data Collected Infant/fetus: identification information (name, address, date-of-birth, etc.), demographic information

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 669 Vermont Birth Information Network

Purpose: surveillance, service, prevention Partner: Department of Health, university, hospital, advocacy Program status: Program has not started collecting data yet Organizational location: Department of Health (Statistics) Population covered annually: 6500 Statewide: yes Current legislation or rule: Act 32 Legislation year enacted: 2003

Case Deﬁnition Outcomes covered: major birth defects and genetic diseases, very low birthweight (less than 1500 grams) Age: up to one year after delivery Residence: in and out of state births to state residents

Contact(s) Peggy Brozicevic Research & Statistics Chief Vermont Department of Health P.O. Box 70; 108 Cherry Street Burlington, VT 05402 Phone: 802-863-7298; Fax: 802-865-7701 E-mail: [email protected]

John Burley Public Health Analyst III Vermont Department of Health P.O. Box 70; 108 Cherry Street Burlington, VT 05402 Phone: 802-863-7611; Fax: 802-865-7701 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 670 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Virginia Virginia Congenital Anomalies Reporting And Education System (VACARES)

Purpose: surveillance Data Analysis Partner: university, hospital, child program Data analysis software: SAS, MS Access Program status: Currently collecting data Quality assurance: validity checks, double-checking of Start year: 1985 assigned codes, comparison/veriﬁcation between Earliest year of available data: 1987 multiple data sources, data/hospital audits, timeliness Organizational location: Pediatric Screenings and Data use and analysis: routine statistical monitoring, Genetic Services, Div. of Child and Adolescent Health baseline rates, rates by demographic and other variables, Population covered annually: Calendar Year 2002- time trends, epidemiologic studies (using only program 98,864 data), needs assessment, service delivery, referral, grant Statewide: yes proposals, education/public awareness, prevention Current legislation or rule: Health Law 32.1-69.1,-69.1:1,- projects 69.2 Legislation year enacted: 1985, ammended 1986, 1988 System Integration System links: state registry Case Deﬁnition System integration: The current system, Virginia Infant Outcomes covered: Major Birth defects and genetic Screening and Infant Tracking System (VISITS), is an diseases intregrated database that tracks screening results for Pregnancy outcome: live births (all gestational ages and VaCARES and the following programs and services: birth weights) Virginia Newborn Hearing Screening Program, Virginia Age: below 24 months of age Newborn Screening Services (future) and At Risk Residence: In and out-of-state births to state residents Referral Service (pilot).

Surveillance methods Funding Case ascertainment: Passive, population-based Funding source: MCH funds 70%, CDC grant 30% Case finding/identification sources: Vital records: birth certificates, death certificates, Other matched birth/death file Web site: www.vahealth.org/genetics Other state based registries: newborn hearing screening Surveillance reports on file: A 10-Year report (1989-1998) program, newborn biochemical screening program was published in 2002. Delivery hospitals: discharge summaries, Medical Procedure manual available: yes records abstracts codes from charts Additional information on file: Oracle database Pediatric & tertiary care hospitals: discharge Comments: As of March 2004, most hospitals are summaries, Medical Records abstracts codes from charts entering data directly into database from the hospital contacts via Virginia Infant Screening and Infant Tracking Program (VISITS), a web-based tracking and Case Ascertainment data management system. Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, any chart with Contact(s) a selected list of ICD9-CM codes outside 740-759, any Sharon K. Williams, MS, RN chart with selected defects or medical conditions ie Virginia Genetics Program Manager abnormal facies, congenital heart disease, any birth Virginia Department of Health certificate with a birth defect box checked, all neonatal 109 Governor Street, 8th Floor deaths, Chart review is done by the coders in Health Richmond, VA 23219 Information Management Phone: 804-864-7712; Fax: 804-864-7721 Conditions warranting a chart review beyond the E-mail: [email protected] newborn period: any infant with a codable defect Coding: ICD-9-CM, ICD-10 for death certificate Nancy C. Ford, MPH,RN Director, Pediatric Screening and Genetic Services Data Collected Virginia Department of Health Infant/fetus: identification information (name, address, 109 Governor Street, 8th Floor date-of-birth, etc.), demographic information Richmond, VA 23219 (race/ethnicity, sex, etc.), birth defect diagnostic Phone: 804-864-7691; Fax: 804-864-7721 information E-mail: [email protected] Mother: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.) Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Database storage/management: Oracle

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 671 Washington Washington State Birth Defects Surveillance System (BDSS)

Purpose: surveillance, service Father: identification information (name, address, date- Partner: university, hospital of-birth, etc.) Program status: Currently collecting data Start year: 1986- Active and 1991- Passive Data Collection Methods and Storage Earliest year of available data: 1987 Database storage/management: Web-based SQL server Organizational location: Department of Health (Maternal and Child Health) Data Analysis Population covered annually: 80,000 Data analysis software: SAS, MS Access Statewide: yes Quality assurance: validity checks, re-abstraction of Current legislation or rule: Notifiable Conditions: WAC cases, comparison/verification between multiple data 246-101 sources, data/hospital audits, timeliness Legislation year enacted: 2000 Data use and analysis: routine statistical monitoring, baseline rates, monitoring outbreaks and cluster Case Definition investigations, time trends, observed vs expected Outcomes covered: From 1987 to 1991 (active analyses, service delivery, grant proposals, education/ surveillance), and from 1991 to the 2000 (passive public awareness, prevention projects surveillance), the cases reportable to the Birth Defects Registry included those with ICD-9-CM codes 740-759, Funding selected primary cancers, selected metabolic Funding source: general state funds 40%, MCH funds conditions, and FAS/FAE. Since the adoption of the 60% Notifiable Conditions law in 2000, conditions subject to mandatory reporting are neural tube defects, Other orofacial clefts, limb deficiencies, abdominal wall Surveillance reports on file: Brighter Futures report defects, hypospadias/epispadias and Down syndrome. available for 1987-1988 data; Available by June 2004 FAS/FAE, Cerebral Palsy and Autism are designated Washington State Birth Defects as provisionally reportable with systems being Surveillance System: Status Report 1995 — 2002 established to ascertain cases outside the hospital Procedure manual available: yes setting. Pregnancy outcome: live births (all gestational ages and Contact(s) birth weights), fetal deaths—stillbirths, spontaneous Riley Peters, PhD abortions, etc. (20 weeks gestation and greater) Manager, MCH Assessment Age: to age 4 years historically; We are transitioning to Washington Dept. of Health; Maternal and Child ascertainment through 1 year of age for structural defects Health and to age eight for FAS/FAE, Cerebral Palsy and P.O. Box 47835 Autism. Olympia, WA 98504-7835 Residence: resident births; children born or diagnosed Phone: 360-236-3553; Fax: 360-236-2323 in-state E-mail: [email protected]

Surveillance methods Case ascertainment: passive Case finding/identification sources: Vital records: birth certificates, death certificates, fetal death certificates, elective termination certificates Delivery hospitals: disease index or discharge index Pediatric & tertiary care hospitals: disease index or discharge index Other sources: Currently developing data sharing with University-based FAS/FAE clinic.

Case Ascertainment Coding: ICD-9-CM, FAS/FAE coding scheme will be utilized in data collection and case description for FAS/ FAE cases.

Birth Defects Research (Part A) 70:609–676 (2004) 672 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY West Virginia West Virginia Congenital Abnormalities Registry, Education And Surveillance System (WVCARESS)

Purpose: surveillance, service, prevention seizure), GI condition (ie intestinal blockage), GU Partner: university, hospital, child program, advocacy condition (ie recurrent infections), cardiovascular Program status: Currently collecting data condition, all infant deaths (excluding prematurity), Start year: 1989 childhood deaths between 1 and 6, ocular conditions, Earliest year of available data: 1989 auditory/hearing conditions, any infant with a codable Organizational location: Department of Health defect (Epidemiology/Environment), Department of Health Coding: ICD-9-CM, ICD-10-CM (Vital Statistics), Department of Health (Maternal and Child Health) Data Collected Population covered annually: 21,000 Infant/fetus: identification information (name, Statewide: yes address, date-of-birth, etc.), demographic information Current legislation or rule: State Statute Section 16-5-12a (race/ethnicity, sex, etc.), birth measurements Legislation year enacted: 1991 (weight, gestation, Apgars, etc.), tests and procedures, State Stature Section 16-40-1 infant complications, birth defect diagnostic Legislation updated: 2002 information Mother: identification information (name, address, date- Case Definition of-birth, etc.), demographic information (race/ethnicity, Outcomes covered: Congenital anomalies of ICD-9 codes sex, etc.), gravidity/parity, illnesses/conditions, prenatal 740-759, 760, 764, 765, 766 care, prenatal diagnostic information, Pregnancy outcome: (all gestational ages and birth pregnancy/delivery complications, family history weights), fetal deaths—stillbirths, spontaneous abortions, Father: identification information (name, address, date- etc. (20 weeks gestation and greater), (all gestational ages of-birth, etc.), demographic information (race/ethnicity, and birth weights), elective terminations (20 weeks sex, etc.), illnesses/conditions, family history gestation and greater) Data Collection Methods and Storage Age: 0-6 Database storage/management: MS Access, Mainframe, Residence: In and out of state births to state residents Visual D-Base Surveillance methods Data Analysis Case ascertainment: active, population-based Data analysis software: custom Case finding/identification sources: Quality assurance: validity checks, Vital records: birth certificates, death certificates, comparison/verification between multiple data sources matched birth/death file, fetal death certificates, elective Data use and analysis: routine statistical monitoring, termination certificates baseline rates, rates by demographic and other variables, Other state based registries: programs for children with time trends, observed vs expected analyses, special needs, newborn hearing screening program, epidemiologic studies (using only program data), needs newborn biochemical screening program, cancer registry, assessment, referral, grant proposals, education/public AIDS/HIV registry, SIDS awareness, prevention projects Delivery hospitals: Hospital personnel complete Birth Defect Reporting forms, reports also sent from Genetics System Integration Program. System links: Plans are underway to link several Pediatric & tertiary care hospitals: Hospital personnel programs housed in the office of Maternal, Child and complete Birth Defect Reporting forms, reports also sent Family Health from Genetics Program. Other specialty facilities: genetic counseling/clinical Funding genetic facilities Funding source: CDC grant 100% Other sources: physician reports, Pediatric referrals of children diagnosed after delivery and discharge Other Web site: www.wvdhhr.org Case Ascertainment Comments: Contact person 3: Jackie Newson, BA; Conditions warranting chart review in newborn period: any Program Coordinator; 350 Capitol Street, Room 427; chart with a ICD9-CM code 740-759, any chart with selected Charleston, WV 25301; Phone: 304-58-7258; Fax: 304-558- procedure codes, any chart with selected defects or medical 3510; E-mail: [email protected] conditions ie abnormal facies, congenital heart disease, any birth certificate with a birth defect box checked, less than 2500 Contact(s) grams or less than 37 weeks, all stillborn infants, all neonatal Kathryn G. Cummons, MSW deaths, all elective abortions, all infants with low APGAR Director, Research, Evaluation scores, all infants in NICU or special care nursery, all prenatal OMCFH diagnosed or suspected cases 350 Capitol St. Conditions warranting a chart review beyond the Charleston, WV 25301 newborn period: facial dysmorphism or abnormal facies, Phone: 304-558-7171; Fax: 304-558-3510 failure to thrive, developmental delay, CNS condition (ie E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 673 Melissa A. Baker, MA Epidemiologist OMCFH 350 Capitol St. Charleston, WV 25301 Phone: 304-558-7247; Fax: 304-558-3510 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 674 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY Wisconsin Wisconsin Birth Defects Registry (WBDR)

Purpose: surveillance, research, service Data Analysis Partner: Department of Health, university, hospital, child Data analysis software: SAS program, advocacy Quality assurance: validity checks, Program status: Currently collecting data comparison/veriﬁcation between multiple data sources Start year: 2004 Data use and analysis: baseline rates, rates by Earliest year of available data: 2004 demographic and other variables, monitoring outbreaks Organizational location: Department of Health and and cluster investigations, time trends, capture-recapture Family Services (CSHCN) analyses, observed vs expected analyses, epidemiologic Population covered annually: ϳ67,000 studies (using only program data), identiﬁcation of Statewide: yes potential cases for other epidemiologic studies, needs Current legislation or rule: Statute 253.12 assessment, service delivery, referral, grant proposals, HFS 116—Took effect April 1, 2003 education/public awareness, prevention projects, Items Legislation year enacted: 2000 checked above are the ones likely to be used.

System Integration Case Definition System links: Would like to link to birth records, the Outcomes covered: Structural malformations, Newborn Screening Program and the Newborn Hearing deformations, disruptions, or dysplasias; genetic, Screening Program in the future. inherited, or biochemical diseases. Pregnancy outcome: live births (all gestational ages and Funding birth weights), fetal deaths—stillbirths, spontaneous Funding source: general state funds 35%, MCH funds abortions, etc. (20 weeks gestation and greater) 23%, CDC grant 42% Age: birth to 2 years Residence: Statute mandates reporting of birth defects Other diagnosed or treated in Wisconsin regardless of Web site: http://www.dhfs.state.wi.us/dph_bfch/cshcn residence status. https://www.wbdr.han.wisc.edu Surveillance reports on file: Birth and Developmental Surveillance methods Outcome Monitoring Program 1990-91,Birth and Case ascertainment: passive, population-based Developmental Outcome Monitoring Program 1990-94 Case finding/identification sources: Comments: The new program requires complete Vital records: birth certificates, death certificates, specification through an Advisory Council and matched birth/death file, fetal death certificates Administrative Rule. The Council meets quarterly. Other state based registries: newborn hearing Administrative rules took effect April 1, 2003. screening program, newborn biochemical screening program Contact(s) Pediatric & tertiary care hospitals: Case reports from Elizabeth Oftedahl pediatric specialty clinics CSHCN Epidemiologist Third party payers: Medicaid databases Division of Public Health, Department of Health and Other specialty facilities: genetic counseling/clinical Family Services genetic facilities 1 West Wilson, PO Box 2659 Other sources: physician reports, hospital discharge data Madison, WI 53701 through 2 yrs of age Phone: 608-261-9304; Fax: 608-267-3824 E-mail: [email protected] Case Ascertainment Peggy Helm-Quest, MSEd, MHA, CHES Coding: ICD-9-CM CSHCN Supervisor Division of Public Health, Department of Health and Data Collected Family Services Infant/fetus: identification information (name, address, 1 West Wilson, PO Box 2659 date-of-birth, etc.), demographic information Madison, WI 53701 (race/ethnicity, sex, etc.), birth measurements (weight, Phone: 608-267-2945; Fax: 608-267-3824 gestation, Apgars, etc.), birth defect diagnostic E-mail: [email protected] information Mother: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.) Father: identification information (name, address, date- of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Database storage/management: Oracle

Birth Defects Research (Part A) 70:609–676 (2004) STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY 675 Wyoming

Program status: Interested in developing a surveillance program

Contact(s) Dorothy Ailes, RN-C, MSN, PNP Program Manager, Children Special Health WY Department of Health, Community and Family Health Div. 4020 House Avenue Cheyenne, WY 82002 Phone: 307-777-5413; Fax: 307-777-7215 E-mail: [email protected]

Birth Defects Research (Part A) 70:609–676 (2004) 676 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY US Department of Defense United States Department Of Defense (DoD) Birth And Infant Health Registry

Purpose: surveillance, research Mother: identification information (name, address, date- Partner: university, hospital, CDC of-birth, etc.), demographic information (race/ethnicity, Program status: Currently collecting data sex, etc.), illnesses/conditions, prenatal diagnostic Start year: 1998 information, pregnancy/delivery complications Earliest year of available data: 1998 Father: identification information (name, address, date- Organizational location: Department of Defense Center of-birth, etc.), demographic information (race/ethnicity, for Deployment Health Research, Naval Health Research sex, etc.), illnesses/conditions Center, San Diego, CA Population covered annually: approx 90,000 per year Data Collection Methods and Storage Statewide: No: Nation/World; Department of Defense Database storage/management: MS Access, SAS (DoD) beneficiaries, includes all uniformed services personnel who are eligible for health care benefits Data Analysis Current legislation or rule: Assistant Secretary of Data analysis software: SAS Defense, Health Affairs Policy Memorandum Quality assurance: validity checks, re-abstraction of Legislation year enacted: 1998 cases, double-checking of assigned codes, comparison/ verification between multiple data sources, clinical Case Definition review Outcomes covered: CDC-recommended major birth Data use and analysis: routine statistical monitoring, defects baseline rates, rates by demographic and other variables, Pregnancy outcome: live births (all gestational ages and time trends, observed vs expected analyses, birth weights) epidemiologic studies (using only program data), Age: Birth to 1 year identification of potential cases for other epidemiologic Residence: Worldwide; any birth to a US military studies, grant proposals, prevention projects beneficiary System Integration Surveillance methods System links: DoD databases Case ascertainment: Electronic diagnostic codes from all System integration: DoD databases inpatient and outpatient healthcare encounters of US military beneficiaries, combination, population-based Funding Case finding/identification sources: Funding source: other federal funding 100% Delivery hospitals: disease index or discharge index, discharge summaries, specialty outpatient clinics, All Other inpatient and outpatient encounters are captured in Web site: http://www.nhrc.navy.mil/rsch/code25/ standardized DoD data projects/birthdefects.htm Pediatric & tertiary care hospitals: disease index or Surveillance reports on file: DoD/HA policy discharge index, discharge summaries, specialty memorandum; Technical Reports outpatient clinics, All inpatient and outpatient encounters are captured in standardized DoD data Contact(s) Third party payers: All inpatient and outpatient Margaret Ryan, MD, MPH encounters are captured in standardized DoD data Director, DoD Birth and Infant Health Registry Other sources: Validation of standardized electronic data DoD Center for Deployment Health Research, Code 25, is performed by active case ascertainment and chart Naval Health Research Center review of a random sample of births from both military P.O. Box 85122 and civilain facilities. San Diego, CA 92186-5122 Phone: 619-553-8097; Fax: 619-553-7601 Case Ascertainment E-mail: [email protected] Conditions warranting chart review in newborn period: any chart with a ICD9-CM code 740-759, any chart with Rosha Aran, BS a CDC/BPA code, Validation of standardized electronic Coordinator data is performed by active case ascertainment and chart DoD Birth and Infant Health Registry review of a random sample of births from both military NHRC, PO Box 85122 and civilain facilities. San Diego, CA 92186-5122 Conditions warranting a chart review beyond the Phone: 619-553-9255; Fax: 619-553-7601 newborn period: any infant with a codable defect E-mail: [email protected] Coding: ICD-9-CM

Data Collected Infant/fetus: identiﬁcation information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.), tests and procedures, infant complications, birth defect diagnostic information

Birth Defects Research (Part A) 70:609–676 (2004)