Systems and Data Sources for Congenital Anomalies Surveillance in Canada

 

Updated: 27 May, 2009

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Systems and Data Sources for Congenital Anomalies Surveillance in Canada - 2012
Province/
Territory
Program
name
Earliest available data Live births covered yearly Province/ Territory/ Nation-wide Case definition Surveillance Methods Data Collected Data use Mandatory Reportable Cases
Yes/No
Conditions Pregnancy Outcomes Age Coding Data Sources Case ascertainment Infant/fetus information Mother information Father information
AB Alberta Congenital Anomalies Surveillance System (ACASS) 1980 ~38,000-50,000 yes all anomalies in ICD-9 Ch XIV and ICD-10 Ch XVII. Also congenital haematologic, metabolic, neuromuscular, endocrine, neoplastic and neurologic disorders as well as congenital infections if associated with anomalies live births, some fetal deaths <20 wks, fetal deaths ≥20 wks, and elective terminations up to 1 yr after delivery RCPCH adaptation of ICD-10, ICD-9/10 (if not covered adequately in RCPCH), and McKusick Classification hospital records, clinical genetics centres, pathology/autopsy reports, cytogenetic laboratories, newborn metabolic screening and vital stats active and passive (medical records are reviewed when diagnosis is unclear or unconfirmed at time of ascertainment/reporting; letters are sent to physicians to clarify diagnoses and encourage reporting) identification and demographic, birth weight, gestational age, birth defect diagnostic information identification and demographic identification and demographic routine statistical monitoring, monitoring outbreaks and cluster investigation, epidemiological studies, data requests from clinics, special interest groups and health units/regions no
BC Health Status Registry (HSR) 1952 ~45,000 yes most congenital anomalies, some metabolic and genetic diseases, some handicapping conditions up to 19 yrs of age live births, fetal deaths ≥20 wks a person can be registered at any time, if registration requirements are met ICD-9/10 and McKusick Classification hospital records, hospital separation data, clinical genetics centres, and vital stats (birth/death certificates) passive identification and demographic identification and demographic identification and demographic routine statistical monitoring, monitoring outbreaks and cluster investigation, epidemiological studies and identification of potential cases for other epidemiological studies, public health program evaluation no
BC Perinatal Data Registry, Perinatal Services BC 2000 ~45,000 yes all anomalies in ICD-10 Ch XVII live births, fetal deaths ≥20 wks, elective terminations ≥20 wks, birth weight ≥500 grams up to 28 days of life or 1 year if never discharged home ICD-9/10 hospital records, hospital separation data, physician reports, prenatal diagnostic facilities, and vital stats (birth/death certificates) passive identification and demographic, birth weight, gestational age, birth defect diagnostic information, and results from certain tests and procedures identification and demographic, gravidity/parity, illnesses/conditions, prenatal care, prenatal diagnostic information, pregnancy/delivery complications, maternal risk factors no information collected routine statistical monitoring no
NB New Brunswick Congenital Anomalies Surveillance Project 2000 ~7,000 yes all anomalies in ICD-10 Ch XVII live births and fetal deaths ≥20 wks up to 1 yr after delivery (most data gained on postnatal diagnosis at time of discharge) ICD-10 hospital records and vital statistics (birth/death certificates) passive identification and demographic, birth weight, gestational age, birth defect diagnostic information identification and demographic no information collected routine statistical monitoring no
NL Newfoundland and Labrador Provincial Perinatal Program (NLPPP) 2001 ~5,000 no
(85% coverage - 3 of 4 Regional Health Authorities)
all anomalies in ICD-10 Ch XVI live births, fetal deaths ≥20 wks and elective terminations ≥20 wks up to 28 days of age or discharge or death ICD-10 hospital separation data, prenatal record, follow-up clinic and vital stats (birth/death certificates) active and passive identification and demographic, birth weight, gestational age, birth defect diagnostic information, and results from certain tests and procedures, and infant complications identification and demographic, gravidity/parity, illnesses/conditions, prenatal care, prenatal diagnostic info, pregnancy/delivery complications, maternal risk factors identification and demographic routine statistical monitoring/surveillance, epidemiological studies/applied health research, clinical review, quality assurance, program planning no
NS Surveillance for Congenital Anomalies in Nova Scotia (SCANS) (Atlee Perinatal Database (NSAPD) and the Fetal Anomaly Database (FAD) transitioning to SCANS starting 2011) 1980 (Atlee)
1992 (FAD)
~9,000 yes all anomalies live births, stillbirths (NSAPD); including elective terminations regardless of GA (FADB); both (SCANS) up to 28 days of age or discharge or death (NSAPD, FADB); up to one year (SCANS) NSAPD definitions (from 1980) with ICD-10-CA from 2003; FADB definitions; RCPCH adaptation of ICD-10 (with McKusick) in SCANS medical chart (NSAPD); with prenatal diagnostic facilities, cytogenetic laboratories, maternal serum screening programs (FADB); with Vital Statistics, billings (SCANS) passive (NSAPD); active (FADB and SCANS) demographic, anthropometric, birth defect diagnostic information, results from certain tests and procedures, and infant complications (NSAPD); with karyotype, prenatal test results (FADB), with recommended variables (SCANS) demographic, obstetric history, illnesses/conditions, prenatal care, pregnancy/delivery complications (NSAPD); maternal risk factors (FADB), with recommended variables (SCANS) none (NSAPD); occupation (FADB); with ethnicity, consanguinity (SCANS) epidemiological studies, clinical review (FADB); with routine statistical monitoring, program planning (NSAPD), with cluster investigation (SCANS) no
NU Nutaqqavut Surveillance System (NSS) 2010 ~750 yes all anomalies in ICD-10 Ch XVII, inborn errors of metabolism and hereditary muscle and blood disorders all, except early terminations up to preschool (age 4) ICD-9/10 hospital records, hospital discharge forms, prenatal records, well-child visit forms, birth defect reporting form, laboratory database, summary records from out-of-territory hospitals active and passive demographic, birth weight, gestational age, prenatal ultrasound, congenital anomalies diagnostic info, developmental delay, developmental conditions, hearing loss demographic, gravidity/parity, illnesses/conditions, prenatal care, prenatal diagnostic information, pregnancy/delivery complications, maternal risk factors, maternal nutrition/food security, maternal exposures ethnicity, congenital anomalies, occupation, education level routine statistical monitoring, program planning, clinical review, surveillance and research no
NWT NWT Congenital Anomalies Surveillance System 2011 ~680
(average annual births between 2000-2007)
yes all anomalies on ICD-10 Q16.0 live births and fetal deaths ≥20 wks up to 19 years after delivery ICD-10 Q16.0 hospital records, pathology reports, newborn metabolic screening and vital stats active and passive identification and demographic, birth weight, gestational age, birth defect diagnostic information identification and demographic identification and demographic routine statistical monitoring, epidemiological studies, data requests yes
ON Better Outcomes Registry & Network (BORN) Ontario 1993-2008
(Please refer to the BORN Ontario info page for more information)
~140,000 yes neural tube defects, other CNS anomalies, cleft lip, cleft palate, Down syndrome, cardiovascular, GI, musculoskeletal, renal and respiratory anomalies, trisomy 18 and 21, data on other cytogenetic and ultrasound abnormalities, inborn errors of metabolism, CF live births and fetal deaths ≥20 wks, and terminations for fetal anomalies following prenatal diagnosis prenatal up to within a few days of birth, planning to expand up to 1 year of age ICD-10-CA and database-specific codes 1. Ontario Maternal Multiple Marker Screening Program (OMMMS)
2. Fetal Alert Network (FAN)
3. Niday Perinatal Database
4. Newborn Screeing Ontario
5. Ontario Midwifery Program •Planning to have data from: paediatric cardiology, genetic clinics, paediatric hospitals, vital stats
active and passive identification and demographic, birth weight, gestational age, birth defect diagnostic information, results from certain tests and procedures, and infant complications identification and demographic, gravidity/parity, illnesses/conditions, prenatal care, prenatal diagnostic information, pregnancy/delivery complications and maternal risk factors, family history, maternal age at delivery no information collected routine statistical monitoring no
PEI PEI Reproductive Care Program 1990 ~1,400 - 1,500 yes all anomalies in ICD-9 Ch XIV and ICD-10 Ch XVII live births and fetal deaths ≥20 wks and ≥ 500 grams to initial discharge from hospital and readmission to hospital up to and including 28 days of age ICD-9/10 hospital records and prenatal records active identification and demographic, birth weight, gestational age, birth defect diagnostic information, and results from certain tests and procedures, and infant complications demographic, gravidity/parity, illnesses/conditions, prenatal care, prenatal diagnostic information, pregnancy/delivery complications, maternal risk factors age, employment status routine statistical monitoring and identification of potential cases for other epidemiological studies no
QC Quebec Congenital Anomalies Surveillance System 1989 ~ 88,000 yes all anomalies in ICD-9 Ch XIV and ICD-10 Ch XVII live births and fetal deaths ≥20 wks up to 1 yr after delivery ICD-10 numerator: hospital data records for infants < 1 year old (Med-Echo) and stillbirths (Vital Stats); denominator: live births and stillbirths data from Vital Stats passive demographic, birth defect diagnostic information no information collected no information collected routine statistical monitoring, epidemiological studies no
YT Congenital Anomalies Surveillance Yukon (CASY) mid-2011 ~385 yes all anomalies in ICD-10 Ch XVII, inborn errors of metabolism and hereditary muscle and blood disorders live births, fetal deaths ≥20 wks, elective terminations ≥20 wks, all elective terminations due to a congenital anomaly up to 1 year of age ICD-10 discharge summaries, reporting from health care professionals in territory active demographic, some perinatal, malformation and testing data demographic, some perinatal, exposures, testing and family history data limited demographic and family history data routine statistical monitoring, program planning, clinical review, surveillance and research no
CANADA Canadian Congenital Anomalies Surveillance System (CCASS) Hospitalisation Data (source: CIHI) 1973 ~370,000 all Provinces and Territories all anomalies in ICD-9 Ch XIV and ICD-10 Ch XVII live births and fetal deaths ≥20 wks up to 1 yr after delivery before 2001 and 30 days since 2001 (except QC and AB still 1 year) ICD-9/10 hospital admission/separation data passive demographic, birth defect diagnostic information no information collected no information collected routine epidemiological monitoring of trends, reports, studies, data requests n/a
Canadian Congenital Anomalies Surveillance System (CCASS) 2011 ~162,135 NS, NU, ON, YT, Saskatoon Health Region (SHR) all anomalies in ICD-10 Ch XVII live births, stillbirths ≥20 wks and terminations of pregnancies up to 1 year of age ICD-10 provincial and territorial congenital anomalies surveillance program data active and passive demographic, birth weight, gestational age, birth defect diagnostic information date of birth, place of residence no information collected routine epidemiological monitoring of trends, reporting, studies, data requests n/a
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