Courtney R. Green, PhD Manager of Research Development The Canada Fetal Alcohol Spectrum Disorder (FASD) Research Network: Diagnostic Guidelines Project

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

CanFASD  Evolved from the Canada Northwest FASD Research Network –Primary purpose was to advance clinical and applied quantitative and qualitative research to improve understanding of diagnostics, interventions, surveillance and prevention related to FASD. –Information was anticipated to lead to improvements in public policy and programming  Decision for Network to “go National” in 2010  Not-for-profit status obtained in BC in 2012  Federal Charitable Status awarded in 2013  NB joined Network in 2013

CanFASD Jurisdictions

CanFASD Mission “To produce and maintain national, collaborative research designed for sharing with all Canadians, leading to prevention strategies and improved support services for people affected by Fetal Alcohol Spectrum Disorder”

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

CanFASD Activities CoordinationParticipationKTEngagement Research Priorities Workshop Funding for research teams NewslettersSteering Committee Prevention WorkshopResearch committeesWebsiteEngage community through Board MeetingsGrant reviewsMedia ResponsesGovernment meetings ReceptionsFacilitate proposalsIssue PapersFamily Advisory Committee Attend conferencesPresentationsNetworking Opportunities Publish papersPress Releases Present dataAnnual Report Provide expertiseFacebook Page Do research! Travel awards

Participating in Research: Projects  Canadian Guidelines for the Diagnosis of Fetal Alcohol Spectrum Disorder: Revision and Update  Universal Dataform for FASD  Development of a Pan-Canadian, coherent and comprehensive plan for FASD Prevention  Measuring Prevalence of Fetal Alcohol Spectrum Disorder in Canada  Development of an online Training Program for FASD Diagnostic Teams  Treatment Improvement Protocol for FASD  Research priorities workshop  Policy workshop  Survey about access to mental health services  Caregiver needs survey

Diagnostic Guidelines Revision and Update Project

Steering Committee  Dr. Sally Anderson, NIAAA, USA  Dr. Mary Ellen Baldwin, C. Psychologist, AB  Dr. Albert Chudley, MD, MB  Dr. Sterling Clarren, MD (SD-CanFASD), BC  Dr. Julie Conry, C. Psychologist, BC  Dr. Jocelynn Cook, ED-CanFASD, ON  Ms. Margaret Gillis, PHAC, ON  Dr. Nicole LeBlanc, MD, NB  Dr. Christine Lilley, C. Psychologist, BC  Dr. Chris Loock, MD, BC  Ms. Jan Lutke, Clinical Manager-CanFASD, BC  Ms. Bernie Mallon, Clinical Coordinator, AB  Ms. Audrey McFarlane, ED-Lakeland Centre for FASD, AB  Dr. Ted Rosale, MD, NL  Dr. Valerie Temple, C. Psychologist, ON

Timeline & Activities Comprehensive Literature Review (Fall 2012) Gaps, Concerns and Limitations Clinic Survey (Spring 2013) Meetings (ongoing) Quarterly conference calls Annual Face-To-Face meeting (Feb. 2013; 2014) Workshop (Oct. 2013) Invited experts (Infants, Adults, Brain) Final Guidelines (March 2014)

Major Decisions/Challenges Nomenclature/Terminology Generic use of FASD as a diagnosis Integration of mental health Brain Adopt (or not) DSM criteria (superdomains) Relax cut-offs for brain domains 2 SD to 1.5 SD Face Relax face from 2 SD to 1.5 SD Infants/Adults Separate sections or integrated? Alignment with DSM-5 and ICD-12

Dissemination Activities Final Diagnostic Guidelines for FASD March 2014 Publish in CMAJ Draft “synopsis” for parents and stakeholders Present guidelines to partners and stakeholders Conferences Workshops FASD Training Curriculum Summer Institutes

Stay Tuned!