2. The Canada Northwest FASD Research Network Stuart M. Macleod, MD, Ph.D, FRCPC Sterling K. Clarren, MD, FAAP Faculty of Medicine University of British Columbia Faulty of Medicine

3. Exposure to alcohol in utero alters the structure and chemistry of the brain This point is clear from a large number of animal studies This damage can be diagnosed through physical means (physical findings or imaging) in only 15% of cases This damage is otherwise inferred through a neurocognitive profile of performance

4. The lesions result in functional problems ALARMMERS Attention Learning Adaptation Reasoning(IQ) Memory Motor Executive function Regulation of State Speech/language

5. Clinical challenge Ethanol produces a complex diffuse brain injury as opposed to a discrete or isolated defect. Individual patterns of poor cognition, memory, executive functioning, language, attention,motor skills, and social functioning Difficult to fully diagnosis and treat Leading to:  Poor transition to independent adulthood  High rates of maladaptive behaviors  Frequent disintegration of or disenfranchisement from family of caregivers

6. What are FASD’s Common FAS = 1 - 3.5/1000, FASD = 1/100 about 4000 births in Canada/year Expensive Life time cost $1.0 to ?3.5 million annual burden of > $4 billion to Canada Devastating Endless caregiver time and energy Preventable Eliminate ethanol exposure from the embryo/fetus

7. Who is the patient?

8. Among 160 birth mother’s of FAS children* * Astley and Clarren, 2000 25% were missing or dead Expected distribution of majority and minority peoples They had started life at all levels of society - as adults most lived in poverty They had a reasonable distribution of IQ’s but there was a blip of low IQ’s at the bottom

9. Among the 80 women that we could interview Nearly universal reports of lifetimes experiences with extreme physical, sexual and emotional abuse Nearly all had long standing battles with alcohol use and abuse

10. Among the 80 women that we could locate  All would be anticipated to have 2 Mental Health Diagnoses - Substance Abuse and Post Traumatic Stress  But most had several more: depression, manic depression, phobias schizophrenia, etc  The average patient had diagnoses in 4 DSM categories in her record, two patients had 10.

11. Among the 80 women that we could locate There was social isolation: few friends, poor relationships with the family, limited activity We estimated that about half the women had FASD themselves Best access to services -social, mental health, medical WAS DURING PREGNANCY

12. What can we do about FASD? Do you think that we should focus on: TREATMENT Or PREVENTION?

13. These are inseparable PREVENTION SURVEILLANCEDIAGNOSIS INTERVENTION

14. Canada Northwest FASD Research Network arose through the relationship between 7 governments and PHSA

15. Canada Northwest is: 64% of the land mass of Canada (that is larger than the USA) 30% of the population of Canada (that is 3% of the US population) (in 2001)

16. The population of Canada Northwest Canada NW population 8,969,160 British Columbia43% Alberta 32% Manitoba 12% Saskatchewan11% The Territories 2%

18. Organization of Canada NW FASD Research Network Canada Northwest Ministerial Partnership (One minister from each of the 7 jurisdictions) Board of Directors Core Staff * Research HUBS *Administrative supervision and support through: The Provincial Health Services Authority of British Columbia

19. Core responsibilities  Leadership and direction  Coordination  Data base management  Knowledge transfer

20. Possible Hub Organization Virtual Centers for  Project based research eg palpebral fissure size in Canadians  Topic based research eg vocational training and job creation  Locale based research eg interventions in remote community  Contextual research eg FASD as a sexually transmitted disease

21. Canadian Northwest FASD Research Network PREVENTION _________ __________ SURVEILLANCE _________ DIAGNOSIS ________ INTERVENTION _________ ________

22. Approximately 150 projects are currently active in Canada Northwest Research studies (hypothesis based) Data bases Demonstration projects Implementations

23. Canada Northwest Prevention Studies and Projects  General community awareness of alcohol harm  General community awareness of FASD  Focused awareness in targeted populations  Focuses awareness to professionals  Prevention of “at risk” births

24. Canada Northwest Surveillance studies and Projects General consumption:  of alcohol in women of child bearing age  of alcohol in pre-pregnancy/early pregnancy  of any alcohol in pregnancy  of “high risk” drinking in pregnancy Diagnoses within FASD categories  15 Multidisciplinary Diagnostic Programs

25. Canada Northwest Studies in Intervention/Treatment  Social Service management  Educational intervention  Community Living  Legal and social justice programs  Vocational Training  Daily living skills training

26. Next Steps Convene forums to discuss the potential of projects to collaborate in data sharing now and to partner in the future Winnipeg, September 17 DIAGNOSTICS: Making an FASD diagnosis: Networking parameters and population based research Calgary, September 24,25 PREVENTION: The networking of research in women’s issues as related to FASD prevention and best practice intervention. Yellowknife, October 22 INTERVENTION: Initiating a research network to promote the development of evidence based practice in supporting adolescents and adults with FASD.

27. And then Prepare a proposal for research in Western Canada that exploits our expertise, population, and defined needs Define HUBS which will carry out these initiatives Work with decision making bodies to develop these recommendations Prepare to start this work in Phase 2 (onset in April, 2006)

28. Canada Northwest FASD Research Network Touches every system that relates to people Involves people of all ages and backgrounds Forces us to develop programs and methods that are new Can only succeed through cooperation Will succeed in Canada! (if it can succeed anywhere)