the canada northwest fasd research network
DESCRIPTION
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. - PowerPoint PPT PresentationTRANSCRIPT
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
• 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
The lesions result in functional problems
ALARMMERS
• Attention
• Learning
• Adaptation
• Reasoning(IQ)
• Memory
• Motor
• Executive function
• Regulation of State
• Speech/language
Clinical challengeEthanol 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 functioningDifficult 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
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
Who is the patient?
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
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
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, phobiasschizophrenia, etc
The average patient had diagnoses in 4 DSM categories in her record, two patients had 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
What can we do about FASD?
Do you think that weshould focus on:
TREATMENTOrPREVENTION?
These are inseparableThese are inseparable
PREVENTION
SURVEILLANCE DIAGNOSIS
INTERVENTION
Canada Northwest FASD Research Network arose through the relationship between 7
governments and PHSA
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)
The population of Canada Northwest
Canada NW population
8,969,160
British Columbia 43%
Alberta 32%
Manitoba 12%
Saskatchewan 11%
The Territories 2%
Distribution of Population inDistribution of Population inCanada Reporting Significant HeavyCanada Reporting Significant Heavy
Drinking (2001)Drinking (2001)
Organization ofCanada NW FASD Research Network
Canada Northwest Ministerial Partnership(One minister from each of the 7 jurisdictions)
Board of DirectorsCore Staff *
Research HUBS
*Administrative supervision and support through:The Provincial Health Services Authority of British Columbia
Core responsibilities
Leadership and direction Coordination Data base management Knowledge transfer
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
Canadian Northwest FASD Research NetworkCanadian Northwest FASD Research Network
PREVENTION_____________________________________
SURVEILLANCE___________________________
DIAGNOSIS________________________
INTERVENTION_________________
Approximately 150 projects are currently active in Canada Northwest
• Research studies (hypothesis based)
• Data bases
• Demonstration projects
• Implementations
Canada NorthwestPrevention Studies and Projects
General community awareness of alcohol harmGeneral community awareness of FASDFocused awareness in targeted populationsFocuses awareness to professionalsPrevention of “at risk” births
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
Canada NorthwestStudies in Intervention/Treatment
Social Service management Educational intervention Community Living Legal and social justice programs Vocational Training Daily living skills training
Next StepsConvene forums to discuss the potential of projects to collaborate in data sharing now and to
partner in the future
Winnipeg, September 17DIAGNOSTICS: Making an FASD diagnosis: Networking parameters and
population based research
Calgary, September 24,25PREVENTION: 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.
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)
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)