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

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?

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

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

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

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.

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

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 =

PubMed publications 1970-2017

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

2005 International FASD Conference Presenters by Country

2017 International FASD conference Presenters by Country

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

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

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

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

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….

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

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.

A more in depth look at some of CanFASD Research

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

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

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

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

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

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

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

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 www.fasdprevention.wordpress.com

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

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

Blog: CanFASD connect https://canfasdblog.wordpress.com/

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

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

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.

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….

Thank you Contact: www.canfasd.ca info@canfasd.ca