1. Fetal Alcohol Spectrum Disorder: Landscape of the research
June Draude
CanFASD
Ambassador Committee Chair

2. Today’s Presentation Who is CanFASD? What does CanFASD do?
How far has research in FASD come?
What are some of the key areas of FASD research we are working in?

3. CanFASD Vision
“All Canadians are engaged and united with awareness, evidence and knowledge to effectively address the complexities of FASD”

4. Why do we all do what we do?
To better understand drinking during pregnancy so we can help to prevent it
To better understand FASD so we can help those with it
To provide information that informs decisions about policy and programming

5. How we do it Provide a coordinating function
Participate in the research environment
Knowledge Translation
Partnerships and engagement

6. Family Advisory Committee
Assist with research direction, and KT
2 day meeting in Regina for caregivers to have input into the research agenda with CanFASD
This Committee has changed how CanFASD works with caregivers and service providers.

7. Research Focused: Diagnosis Prevention Intervention Prevalence
Education, Justice, Child Welfare
Prevalence

8. How far has FASD research come
Since the publication of Dr. Lemoine in 1969
To the well know publications in 1973
20 years ago – (1997) a pub med search indicated 98 publications
Today, a google search of FASD has 15,000+ results
A pub med search has 180 publications so far this year
A broader search includes 354 this year
Last year the Canada FASD Research Network published the top 30 articles on FASD
Started with a list of 400 which mostly focused on publications that had impact on people’s lives =

9. PubMed publications

10. International view
The first International FASD conference in Vancouver in 2005 which was focused on research to policy and practice
How many countries participated?

11. 2005 International FASD Conference Presenters by Country

12. 2017 International FASD conference Presenters by Country

13. Research in what? 2017 International FASD conference topics
FASD diagnosis (current practices, models of diagnosis)
neurodevelopmental and neuro-behavioural profiles of/associated with FASD
family-focused interventions; strengths-based family research; challenges faced by families/caregivers
prevalence of alcohol consumption during pregnancy
prevalence of FASD
emerging interventions for FASD

14. Research topics con’t
health care provider knowledge of FASD, alcohol consumption during pregnancy
nutrition and alcohol consumption during pregnancy
FASD and the legal/justice system (lived experience of offenders, competency to stand trial, knowledge/attitudes of justice professionals)
mental health (comorbid disorders in FASD, birth mothers), psychiatric symptoms, identifying at-risk mothers
epigenetics (+ gene expression, gene-environment interaction), biomarkers for detection of PAE
stigma (birth mothers of children with FASD)
connection between FASD and ADHD
ethical challenges in FASD research/practice
FASD-informed care/practice

15. FASD Research in Canada
Started with the NW FASD Partnership
Launched the Research Network in 2005
In 2013 the Canada FASD Research Network was born as a NGO
Uniqueness
funded with operational funds from provinces and territories
building relationships with researchers, governments, families, service providers
bringing the groups together to work on complex issues
turning research into information for policy makers, useful tools for service providers and families

16. FASD Research in Canada
Also includes others:
Kids Brain Health (neruo-dev-net)
Individual universities
Centre on Addiction and Mental Health (CAMH)
Centre on Substance Use and Addiction (CCSA)
Centre of Excellence on Women’s Health
Individual researchers

17. FASD Research Highlights in Canada
Publication of FASD diagnostic guidelines 2005, 2015 – Cook et al
International Prevalence work – Popova
Rural Diagnostic services – Rajani/McFarlane
4-Levels of prevention - Poole et al
Learning Together event – Caregivers research priorities
National FASD Data base
So many more….

18. Interesting International Work
Many countries attempting to estimate the worldwide prevalence of FASD and alcohol use during pregnancy
Prevalence within individual countries – Russia; Norway; France; Latin America/Caribbean; and Poland
Societal costs of FASD – Sweden
Knowledge synthesis reports about the state of FASD within Netherlands and Sweden
Review of published literature and evidence based information on PAE in the African continent
Alcohol Consumption, smoking and drug use during pregnancy in Thailand
Supportive care of pregnant women using substances in Brazil

19. Sooo
Canada is a definite world leader in building research to develop and deliver services for prevention and support to those with FASD and their families.

20. A more in depth look at some of CanFASD Research

21. Research in Diagnostics
Dr. Mansfield Mela, Lead
Saskatchewan
Dr. Ana Hanlon-Dearman
Manitoba
Dr. Jocelynn Cook
Ontario

22. Dr. Mansfield Mela Clinical Pathways FASD & MH system
Engaging Psychiatrist
Red Flagging
DSM
Outpatients & Forensics
Training needs of MH professionals

23. Dr. Ana Hanlon-Dearman Diagnosis preschool children
Sleep issues and kids with FASD
Large Canadian research project looking at many neurodevelopmental disorders and brain development

24. Dr. Jocelynn Cook Dx guidelines On line Education National Database
Survey of Front line service providers about knowledge & attitudes towards FASD – results coming soon.

25. Diagnostics - KT
Completed the new Canadian FASD Diagnostic Guidelines which was based only on the published evidence.
New on line training for clinicians working on multidisciplinary teams

26. FASD Prevention from a Women’s Health Determinants Perspective
Nancy Poole, Lead
BC Centre of Excellence for Women’s Health

27. Dr. Nancy Poole Network action team on prevention Preconception
Outcomes of Level 3 prevention programs (specialized)
Women’s action tmt availability/gaps/needs in Canada
Women with FASD
TRC #33

28. www.fasdprevention.wordpress.com Knowledge Exchange Example
Started in July 2010
Canadian and international FASD initiatives
NAT activities
Events & web resources
Research updates
Commentary and discussion
Girls, Women, Alcohol and Pregnancy Blog

29. Intervention on FASD Dr. Jacqueline Pei, Lead Alberta
Dr. Michelle Stewart
Saskatchewan
Dr. Dorothy Badry

30. Dr. Jacquie Pei
Many, many projects that Dr. Pei and her students are working on
Computer gaming/assessment
Educational strategies in math
Social skills
Employment evaluation
Sleep analysis

31. Blog: CanFASD connect

32. Dr. Michelle Stewart Justice Environmental scan
Review of Mental Health & FASD courts
Cross Canada tour
Youth justice
Screening/Assessment in corrections
Improv project – reducing isolation
TRC #34

33. Dr. Dorothy Badry Review CW practices of individuals with FASD
Develop a synthesis of best practices within the CW system
Review of training on FASD within CW
Homelessness and FASD

34. KT – knowledge translation
Issue papers
Policy Alerts
On line education for all sectors that is interactive
TIP on line
Tools for service sectors to standardize some things such as screening; data collection; apps; training
Video clips for general public and families
Better use of social media
Working with the media to portray a more accurate picture of individuals with FASD.

35. Next 20 years Epigenetics
Effective evidence based strategies to support healthy pregnancies
System changes to support individuals with FASD
Perhaps simplified diagnostic processes based on Canadian data.
Technology
Where do you think….

36. Thank you
Contact: