1 / 27

The Canada Northwest FASD Research Network

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. Exposure to alcohol in utero alters the structure and chemistry of the brain.

amato
Télécharger la présentation

The Canada Northwest FASD Research Network

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. 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

  2. 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

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

  4. 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

  5. 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

  6. Who is the patient?

  7. 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

  8. 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

  9. 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.

  10. 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

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

  12. PREVENTION SURVEILLANCE DIAGNOSIS INTERVENTION These are inseparable

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

  14. 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)

  15. The population of Canada Northwest Canada NW population 8,969,160 British Columbia 43% Alberta 32% Manitoba 12% Saskatchewan 11% The Territories 2%

  16. Organization ofCanada 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

  17. Core responsibilities • Leadership and direction • Coordination • Data base management • Knowledge transfer

  18. Possible Hub Organization Virtual Centers for • Project based research egpalpebral fissure size in Canadians • Topic based research egvocational training and job creation • Locale based research eginterventions inremote community • Contextual research egFASD as asexually transmitted disease

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

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

  21. Canada NorthwestPrevention 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

  22. Canada NorthwestSurveillance 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

  23. Canada NorthwestStudies in Intervention/Treatment • Social Service management • Educational intervention • Community Living • Legal and social justice programs • Vocational Training • Daily living skills training

  24. 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.

  25. 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)

  26. 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)

More Related