Executive Summary

The Centre for Addiction and Mental Health (CAMH) received funding from the Public Health Agency of Canada (PHAC) to conduct a comprehensive multi-source surveillance project on fetal alcohol spectrum disorder (FASD) and prenatal alcohol exposure (PAE) in four selected, populous provinces — Alberta (AB), British Columbia (BC), Manitoba (MB), and Ontario (ON) — and two territories, Northwest Territories (NT) and Yukon (YT). This project was conducted in collaboration
with two national organizations: the Canada FASD Research Network (CanFASD) and the Canadian Centre on Substance Use and Addiction (CCSA).

The availability and feasibility of various data sources including national and regional information on FASD and PAE were explored. From April 2017 to June 2020, active and passive surveillance were conducted and FASD/PAE data were collected from all available, identified sources, including published epidemiological studies, population health surveys, administrative health care databases, and neurodevelopmental clinics capable of providing FASD diagnoses. Data from
available sources were aggregated, anonymized, and analyzed to generate estimates of PAE and FASD prevalence in the general population and special subpopulations. To contextualize FASD diagnostic prevalence and clinic capacity, a cross-jurisdictional survey of diagnostic clinics was also conducted. When possible, data were stratified according to the following individual variables: age, socio-economic status, living arrangement, and geographic location. Maternal
characteristics as well as characteristics of individuals diagnosed with FASD (e.g., demographics, mental and physical health comorbidities, and health and social service use) were analyzed, presented, and contextualized.

In order to expand FASD/PAE data collection within existing congenital anomaly surveillance systems, program managers responsible for pertinent perinatal surveillance systems were engaged throughout the project. This enhanced the sustainability of the multi-source surveillance system for FASD and PAE (SSFASD/PAE) initiative and increased capacity for the collection of FASD/PAE data.

The estimated prevalence rates of FASD/PAE emphasize the need to monitor trends over time, which can aid in the design and delivery of targeted prevention, diagnostic, and treatment resources. The tools used to improve case identification across provinces and territories are shared to facilitate improved, centralized, and coordinated data collection of PAE and FASD across Canada. Recommendations for surveillance based on the findings are provided to guide health human resource planning and policy creation, as well as improvements to the accuracy, timeliness, accessibility, and comparability of FASD/PAE surveillance information in Canada.

This pilot study represents a significant milestone in initializing the development of a nationally centralized FASD/PAE surveillance system in Canada. Currently, the provinces and territories all maintain different types of demographic and diagnostic data, which is stored in different formats; a great deal of work is needed to implement and coordinate appropriate surveillance methods for FASD/PAE on a national level. The data collection mechanisms and methodologies
utilized in this project, however, demonstrate that there is a substantial foundation of regional and cross-jurisdictional PAE and FASD data that exists in Canada from which this endeavour can grow.

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