Fetal alcohol spectrum disorder diagnostic clinic capacity in Canadian Provinces and territories — This study investigated the diagnostic capacity for Fetal Alcohol Spectrum Disorder (FASD) in multidisciplinary clinics across several provincial and one territorial jurisdictions of Canada: Alberta, British Columbia, Manitoba, Ontario and Northwest Territories. The data were collected directly from clinics capable of providing diagnoses of FASD and examined annual capacity for the assessment and diagnosis of FASD per year from 2015 to 2019. In total, 58 FASD diagnostic clinics were identified and 33 clinics participated in this survey. The study identified inadequate FASD diagnostic capacity in all participating jurisdictions. Based on the findings and the current population sizes, it is estimated that 98% of individuals with FASD are undiagnosed or misdiagnosed in Canada. Wait times for FASD diagnosis ranged from 1 month to 4.5 years across participating jurisdictions. The annual FASD diagnostic capacity in the select provinces and territories require at least a 67-fold increase per year.

Article cover page

Challenges and strengths experienced by fetal alcohol spectrum disorder diagnostic clinics in Canada (Journal of Intellectual & Developmental Disability) — The Canadian fetal alcohol spectrum disorder (FASD) diagnostic guideline provides clinicians with the process and procedure to reach an accurate diagnosis. However, organisational structure, culture, and resource utilisation vary. The objectives of this study were to identify the key challenges and strengths of successful FASD diagnostic clinics.

journal cover page thumbnail

International Survey of Specialist Fetal Alcohol Spectrum Disorder Diagnostic Clinics: Comparison of Diagnostic Approach and Considerations Regarding the Potential for Unification — Fetal alcohol spectrum disorder (FASD) is a prevalent neurodevelopmental condition. Despite FASD being recognized as a clinical disorder there is no globally agreed set of diagnostic criteria. Accurate and timely diagnosis of FASD is imperative to inform clinical care, optimize outcomes for individuals accessing assessments and their families, as well as for research and prevention strategies. To inform movement towards a unified approach, the present study aimed to capture an international perspective on current FASD diagnostic criteria, as well as potential barriers and facilitators to unification. An online survey was created using REDCap and sent to clinics identified and contacted via internet searches. Quantitative data were presented using descriptive statistics and open-ended questions analysed using content analysis. The survey captured information about each clinic’s current diagnostic approach, whether they would support a unified method, and the barriers and facilitators for a consistent international FASD diagnostic approach. Fifty-five (37.4%) of 147 FASD clinics identified worldwide participated. The majority (n = 50, 90.9%) of respondents supported a unified approach. Content analysis identified a lack of collaboration as a key barrier, while strong leadership in guideline creation and implementation emerged as a central facilitator. These barriers and facilitators can be used to guide future collaborative efforts towards implementing consistent diagnostic criteria.

Cover page thumbnail

Diagnosis of fetal alcohol spectrum disorder: current practices and future considerations — This paper discusses the current state of knowledge and practice for diagnosing fetal alcohol spectrum disorder (FASD). The strengths and challenges of different models of diagnosis are compared. Some models require a team approach for evaluation, while other approaches assume that a clinician in his or her office provides a diagnosis based on a review of the patient’s medical and social history, behaviour, and physical examination. The author reviews the emergence of new information from recent advances in genetics, imaging, and electrophysiology that has the potential to lead to changes in practice and improved reliability of an FASD diagnosis.

Assessing for Fetal Alcohol Spectrum Disorder – A Survey of Assessment Measures Used in Alberta, Canada — This study revealed important information about the use of testing measures in FASD assessment and sheds light on the commonalities in practice across clinics in Alberta. Results demonstrate strong convergence of direct and indirect measures to assess brain function. Ultimately, identifying a comprehensive, reliable, and usable testing battery of measures for FASD assessment will improve the clarity and accuracy of the diagnostic process and facilitate advancements in the eld, as well as enable comparisons across clinics.

Computer-Aided Recognition of Facial Attributes for Fetal Alcohol Spectrum Disorders — The detection of facial attributes by computer-based facial recognition software of 2-D images is compared against standard, manual examination in FASD.

Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan — Published in 2016, this updates the 2005 Guidelines, incorporating new evidence and our improved understanding of FASD diagnosis. It is intended to assist multidisciplinary teams through this complex diagnosis, leading to improved health services and creating a positive impact on the health and well-being of children and adults with FASD across their lifespan.

Deferred diagnosis in children assessed for fetal alcohol spectrum disorder — Early intervention for individuals with FASD is paramount, thus exploring factors that affect the diagnostic process is critical. This process can be complicated by challenges gathering background information, accurately evaluating higher-level cognitive skills across ages, and teasing apart the impact of life adversities from the effects of prenatal alcohol exposure. This study is a retrospective file review of 154 children deferred at their first FASD assessment, and 51 who returned for a second assessment. Data was collected from three Canadian FASD clinics to explore reasons for deferral, the clinical profile of deferred children, why some returning children were diagnosed while others were not, and changes between assessments. Results suggest that deferred children initially lacked evidence of abnormalities sufficient for a diagnosis, presented with areas of relative neurobehavioral strength and difficulty, and children eventually diagnosed with FASD showed significantly more impaired brain function, postnatal risk, and comorbidities than undiagnosed children. These findings provide important insights into the process of clinical assessment for FASD.

Association Between Prenatal Alcohol Exposure and Craniofacial Shape of Children at 12 Months of Age—Children who receive a diagnosis of fetal alcohol spectrum disorder may have a characteristic facial appearance in addition to neurodevelopmental impairment. It is not well understood whether there is a gradient of facial characteristics of children who did not receive a diagnosis of fetal alcohol spectrum disorder but who were exposed to a range of common drinking patterns during pregnancy. The objective of this investigation was to examine the association between dose, frequency, and timing of prenatal alcohol exposure and craniofacial phenotype in 12-month-old children. JAMA Pediatr. Published online June 5, 2017. doi:10.1001/jamapediatrics.2017.0778

A Decision Tree to Identify Children Affected by Prenatal Alcohol Exposure—Study to develop and validate a hierarchical decision tree model that combines neurobehavioral and physical measures to identify children affected by prenatal alcohol exposure even when facial dysmorphology is not present.

The Canadian Guidelines and the Interdisciplinary Clinical Capacity of Canada to Diagnose Fetal Alcohol Spectrum Disorder – In 2005, the CMAJ published the Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. The intent of this publication was to encourage a more consistent interdisciplinary team approach and diagnostic procedure for FASD diagnoses. That same year, the Canada FASD Research Network (CanFASD) determined the locations and capacity for interdisciplinary FASD diagnosis across Canada. This paper discusses how successfully these Guidelines have been in bringing consistency to FASD clinical work. J Popul Ther Clin Pharmacol Vol 18(3):e494-e499; October 16, 2011. Sterling K Clarren, Jan Lutke, Michelle Sherbuck. Link to Download

This report highlights findings from Assessing for Fetal Alcohol Spectrum Disorder (FASD): A National Survey of Assessment Measures Used by FASD Diagnostic Clinics in Canada

Issue Papers

Why FASD Diagnostic Assessment is Important — Early diagnosis of Fetal Alcohol Spectrum Disorder (FASD) allow for an understanding of an individual’s strengths and challenges which facilitates entry into appropriate intervention and support services. In turn, early diagnosis can mitigate the development of difficulties in daily living associated with this neurodevelopmental disability and promote healthier outcomes. Even if individuals do not meet the criteria for a diagnosis of FASD, a comprehensive multidisciplinary assessment process for those who have had prenatal alcohol exposure (PAE) provides important information about learning, behaviour, and physical and mental health that will guide care and appropriate supports. This issue paper outlines the importance of an FASD diagnostic assessment to supporting and improving outcomes for diagnosed individuals and their families.

Diagnostic Assessment of Preschoolers with Prenatal Alcohol Exposure — The purpose of this issue paper is to draw attention to the gap in research focused on FASD diagnosis in preschool aged children and to highlight the benefits of early diagnosis.

Dose-response effect of alcohol consumption during pregnancy and prenatal alcohol exposure: A brief review — Fetal Alcohol Spectrum Disorder (FASD) is the most common type of developmental disability worldwide. One of the most important unanswered questions in the field is “how much alcohol in pregnancy is too much?” or what is the “safe” amount of alcohol consumption in pregnancy. The question has been evaluated extensively in humans and in animal models and the answer is not simple unfortunately.

Meconium Screening for FASD in Pregnancy — Identifying prenatal exposure to alcohol is important for prevention and diagnosis, but information about maternal alcohol consumption is often difficult to obtain. It has been suggested that measuring the presence of fatty acid ethyl esters in meconium may be used as a “biomarker” to establish maternal problem drinking.

Two Recent Approaches to FASD Diagnosis: An Issue Paper — Over the last 50 years, a significant amount of research and clinical expertise has been devoted to characterizing the effects of prenatal alcohol exposure on the developing fetus. Simultaneously, a variety of systems and approaches have also emerged to provide diagnostic guidance for the related diagnoses. Fetal Alcohol Spectrum Disorder (FASD) is now widely used to describe the resultant sequelae associated with prenatal alcohol exposure.

Best Practice Guide for FASD Assessment and Diagnostic Clinics – This Best Practices Guide for FASD comprises evidence-informed practices that describe high-priority areas in the diagnostic clinic that are central to quality and safety.

CanFASD Caregiver’s Guide to Diagnosis — This guide will help you to understand Fetal Alcohol Spectrum Disorder (FASD) and provides information on where to find support for your child or a child in your care.

CanFASD Guide du Responsable Diagnostic de TSAF – Ce guide vous aidera à comprendre le trouble du spectre de l’alcoolisation fœtale (TSAF) et vous indiquera où trouver du soutien pour votre enfant ou un enfant dont vous occupez.

The Disability Tax Credit (DTC) is a non-refundable tax credit that helps people with prolonged disabilities or their supporting persons reduce the amount of income tax they may have to pay.

DTC Frequently Asked Questions
DTC Application Guide for Physicians
DTC Letter Template for Physicians
Tips for paediatricians completing the DTC Form
DTC General Information

FASD Diagnostic FAQ Cards — These cards provide answers to frequently asked questions about FASD diagnosis and where in your province you can find clinics for diagnosis and assessment.


TES Neurodevelopmental Diagnostic Wheel thumbnail
TES Neurodevelopmental Diagnostic Wheel
FASD Clinic Process
FASD Clinic Process

CanFASD launched the only comprehensive FASD database in the world, providing key insight into the profile of individuals with FASD.

CanFASD gets real-time data from clinics across Canada, helping inform policy and practice at a national level. Information from the database provides data back to each of the diagnostic clinics to help them inform and support their own work.

The database provides opportunities for national education and training to improve services for individuals with this neurodevelopmental disorder.

CanFASD’s national database is important for understanding the relationship between diagnostic capacity and service availability for individuals with FASD. In-depth research will inform policy decision and resource allocations pertaining to health services provided to those with FASD. Currently, there are more than 25 clinics from nine provinces and territories participating.

For more information, please contact Andrew Wrath <andrew.wrath@canfasd.ca>

National Database Annual Report 2019 cover
National Database Annual Report 2019

Developing a Multi-source Surveillance System for Fetal Alcohol Spectrum Disorder and Prenatal Alcohol Exposure (SSFASD/PAE)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.

World Health Organization International Study on the Prevalence of Fetal Alcohol Spectrum Disorder (FASD) – Canadian Component — Population-based prevalence data on fetal alcohol spectrum disorder (FASD) among the general population of Canada are unavailable. To fill this gap, the objective of this study was to determine the population-based prevalence of FASD among elementary school students in the Greater Toronto Area (GTA) in Ontario, Canada.

Implications of Higher Than Expected Prevalence of Fetal Alcohol Spectrum Disorders — Discusses the implications of the Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities study.

Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities — Fetal alcohol spectrum disorders are costly, life-long disabilities. Older data suggested the prevalence of the disorder in the United States was 10 per 1000 children; however, there are few current estimates based on larger, diverse US population samples. The objective of this study was to estimate the prevalence of FASD in 4 regions of the United States, and concluded that the estimated prevalence of FASD among first-graders in the 4 US communities ranged from 1.1% to 5.0% using a conservative approach. These findings may represent more accurate US prevalence estimates than previous studies but may not be generalizable to all communities. Supplementary content

Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth: A Systematic Review and Meta-analysis — Prevalence estimates are essential to effectively prioritize, plan, and deliver health care to high-needs populations such as children and youth with FASD. However, most countries do not have population-level prevalence data for FASD. The objective of this study was to obtain prevalence estimates of FASD among children and youth in the general population by country, by World Health Organization (WHO) region, and globally. The findings highlight the need to establish a universal public health message about the potential harm of prenatal alcohol exposure and a routine screening protocol. Brief interventions should be provided, where appropriate. Supplementary content

The release of the final report of a three-year research study into Fetal Alcohol Spectrum Disorder (FASD) prevalence in Yukon’s corrections population has been announced and is available at http://www.justice.gov.yk.ca/FASDStudy.html

Popova, S., Lange, S., Shield, K., Mihic, A., Chudley, A. E., Mukherjee, R. A. S., Bekmuradov, D., & Rehm, J. (2016). Co-morbidity of Fetal Alcohol Spectrum Disorder: A systematic literature review and meta-analysis. The Lancet. Published Online January 5th. DOI: http://dx.doi.org/10.1016/S0140-6736(15)01345-8

Reid, N., Dawe, S., Shelton, D., Harnett, P., Warner, J., Armstrong, E., LeGros, K. and O’Callaghan, F. (2015), Systematic Review of Fetal Alcohol Spectrum Disorder Interventions Across the Life Span. Alcoholism: Clinical and Experimental Research, 39: 2283–2295. doi: 10.1111/acer.12903

Systematic Review of Fetal Alcohol Spectrum Disorder Interventions Across the Life Span

Issue Papers

FASD Prevalence in Special Populations — Based on the most current research, the estimated prevalence of Fetal Alcohol Spectrum Disorder (FASD) in the general Canadian population is 4%. However, rates of FASD are believed to be much higher in certain groups. The goal of this issue paper is to take a closer look at the research on special populations that may be at greater risk for FASD, including children in care, individuals involved in the justice system, and Indigenous communities. This examination is critical to understanding the demographic, social, geographical, and cultural factors that underlie drinking during pregnancy, and which groups may warrant additional support to ensure healthy outcomes.

The Prevalence of Fetal Alcohol Spectrum Disorder — Since Fetal Alcohol Syndrome was first defined in North America in the 1970s, researchers have been working to determine prevalence rates of this disability. The social and economic impacts of Fetal Alcohol Spectrum Disorder (FASD) on families and the broader community are profound, thus understanding the scope of the issue is critical. Over the years, researchers have used various methodologies and examined a range of geographical regions and populations around the world in their efforts to establish prevalence rates. Because of these differing approaches, FASD prevalence findings have not always been consistent. The purpose of this issue paper is to share the most up-to- date research findings, and to provide clarity around the question, “How many people have FASD?”

Social and Economic Cost of FASD — The complexity and chronicity of FASD impacts both the individual and their family, and requires a wide range of assistance from services including health care, community services, remedial education and others. As a result, FASD has a substantial economic and societal impact, as these impairments can have lifelong implications.

Screening approaches for identifying fetal alcohol spectrum disorder in children, adolescents, and adults: A systematic review – Fetal alcohol spectrum disorder (FASD) is a prevalent neurodevelopmental disorder that is caused by prenatal alcohol exposure (PAE) and associated with a range of cognitive, affective, and health concerns. Although the identification of FASD can facilitate the provision of interventions and support, and plays a protective role against adverse outcomes, there are high rates of missed detection. The identification of FASD via screening may improve its recognition across settings. The current systematic review examined the available evidence on FASD screening tools and approaches across age groups and settings.