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

• 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)