Systems and Data Sources for Congenital Anomalies Surveillance in Canada
Updated: 27 May, 2009
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| 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 |
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|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 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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