Alberta Congenital Anomalies Surveillance System, Canada, Alberta
History
The forerunner of the Alberta Congenital Anomalies Surveillance System (ACASS) was established in 1963 as a Registry for Handicapped Children in response to babies born with severe limb malformations due to thalidomide (1958-1962). In addition to collecting data on structural congenital anomalies, this initial system included physical and neurodevelopmental disabilities of children and adults. In 1979, the Alberta government restricted surveillance to congenital anomalies, with an ascertainment limit to one year after delivery. The current system has data available from 1980.
Size and coverage
Live and stillbirths in the province of Alberta are covered, which comprises approximately 50,000 births per year (2020). The definition of stillbirth is greater than 20 weeks gestation and/or greater than 500 grams. In 1997 ACASS started to include those fetuses with congenital anomalies who were either spontaneously lost prior to 20 weeks or where there was termination as a result of prenatal diagnosis. The vast majority of births occur in hospitals.
Sources of Ascertainment
Case notifications are from notices of birth, live birth and stillbirth registrations, death registrations and congenital anomalies reporting forms (CARF) from hospitals throughout the province. The CARF includes a text description of the anomaly(ies) and is based on discharge diagnoses, including readmissions for any reason up to one year of age. Diagnoses are verified by reviewing electronic medical records. Additional sources are speciality clinics, such as medical genetics, cytogenetics laboratories, and pathology.
Exposure information
None is routine.
Data usage
Linkage of ACASS data to Alberta Perinatal Health data for maternal risk factors is possible. Linkage is also possible with Vital Statistics and hospital administrative data sources.
Data is used for the ACASS report, which is published approximately every two years.
https://www.albertahealthservices.ca/assets/info/cmg/if-cmg-ab-congenital-abnormalities-report.pdf
ACASS data is also used to support quality assurance and improvement, and research projects.
Legislation and funding
Reporting is voluntary. The program is run by members of the Department of Medical Genetics, Alberta Children’s Hospital/University of Calgary. Funding is administered by Alberta Health Services.
ACASS peer-reviewed publications for the last 5 years
Thomas MA, Bedard T, Crawford S, Grevers X, Lowry RB. 2023. Craniofacial microsomia, associated congenital anomalies, and risk factors in 63 cases from the Alberta Congenital Anomalies Surveillance System. J Pediatr, 261:113528. https://doi.org/10.1016/j.jpeds.2023.113528
Lowry RB, Bedard T, Grevers X, Crawford S, Greenway SC, Brindle ME, . . . Thomas MA. 2023. The Alberta Congenital Anomalies Surveillance System: a 40-year review with prevalence and trends for selected congenital anomalies, 1997-2019. Health Promot Chronic Dis Prev Can, 43(1):40-48. https://doi.org/10.24095/hpcdp.43.1.04
Machiraju P, Degtiarev V, Patel D, Hazari H, Lowry RB, Bedard T, . . . Khan A. 2022. Phenotype and pathology of the dilated cardiomyopathy with ataxia syndrome in children. J Inherit Metab Dis, 45(2):366-376. https://doi.org/10.1002/jimd.12441
Lowry RB, Bedard T, Crawford S, Grevers X, Bernier FP, Thomas MA. 2020. Prevalence rates study of selected non-Mendelian congenital anomalies in the Hutterite population of Alberta, 1980-2016. Am J Med Genet A, 182(11):2594-2604. https://doi.org/10.1002/ajmg.a.61834
Yu X, Nassar N, Mastroiacovo P, Canfield M, Groisman B, Bermejo-Sánchez E, . . . Agopian AJ. 2019. Hypospadias Prevalence and trends in International Birth Defect Surveillance Systems, 1980-2010. Eur Urol, 76(4):482-490. https://doi.org/10.1016/j.eururo.2019.06.027
Bedard T, Lowry RB. 2019. Disease coding systems for arthrogryposis congenita. Am J Med Genet C Semin Med Genet, 181(3):304-309. https://doi.org/10.1002/ajmg.c.31718
Lowry RB, Crawford S, Bedard T, Sibbald B. 2019. Orofacial clefts in California: No decline in Alberta, Canada. Am J Med Genet A, 179(6):1077-1079. https://doi.org/10.1002/ajmg.a.61136
Address for Further Information
Mary Ann Thomas, MD CM, FRCPC, FCCMG
Program Director
Associate Professor, Departments of Medical Genetics and Pediatrics, University of Calgary
Clinical Geneticist, Alberta Children's Hospital
Calgary, Alberta, Canada
Email: MaryAnn.Thomas@albertahealthservices.ca
R. Brian Lowry, MD, DSc, FRCPC
Professor Emeritus
Departments of Medical Genetics and Pediatrics, University of Calgary
Alberta Children’s Hospital
Calgary, Alberta, Canada
Email: brian.lowry@albertahealthservices.ca
Tanya Bedard, MPH
ACASS - Lead
Alberta Congenital Anomalies Surveillance System
Calgary, Alberta, Canada
Email: tanya.bedard@albertahealthservices.ca
13.11.2023