Media Release

Canada FASD Research Network Developmental Neurosciences & Child Health University of British Columbia F508 - 4480 Oak Street Vancouver BC V6H 3V4 Contact: Jocelynn Cook Phone: 1-778-879-9992 Email: jocelynn.cook@cw.bc.ca FOR IMMEDIATE RELEASE

THE CANADA FETAL ALCOHOL SPECTRUM DISORDER RESEARCH NETWORK WORKS WITH FEDERAL GOVERNMENT TO IMPROVE THE DIAGNOSIS OF FETAL ALCOHOL SPECTRUM DISORDER ACROSS CANADA.
TORONTOFebruary 21, 2013. The Public Health Agency of Canada (PHAC) and the Canada FASD Research Network (CanFASD) are taking leadership on the leading cause of developmental disability in Canada. World-renowned experts met today to talk about a new project funded by PHAC to update the Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis, which were published in 2005 as a supplement in the Canadian Medical Association Journal. PHAC has selected Dr. Jocelynn Cook of CanFASD, as the principal investigator to lead this revision for diagnosing what is known as a complex, lifelong disability. Health Canada (now PHAC) facilitated the original guideline development in 2005, but since then, the field has evolved. Additional evidence and expertise suggest that a revision of these guidelines is essential to improve diagnoses and outcomes for affected individuals. Cook, who also led the process for the original project, will guide a 15-member expert committee, which includes Dr. Sterling Clarren, Scientific Director of CanFASD, as they consider new developments in the field

-moresuch as: screening tools, standardized data and an expansion to include younger children and adults who were not accounted for in 2005. Cook says, It was our first attempt to provide simple-but-thorough evidence-based guidelines intended to guide multidisciplinary teams through this complex diagnosis. We need guidelines that reflect our improved understanding of how to diagnose FASD, which can then help lead to improved health services, create a positive impact on the health and wellbeing of children and adults with FASD across their lifespan, she said. First diagnosed in the early 1970s, FASD is an umbrella term that describes the range of effects that can occur in an individual who was prenatally exposed to alcohol. These life-long effects can include physical, mental, behavioural and learning disabilities. Although the exact prevalence of FASD is unknown, researchers have been conducting studies using populationbased samples to get a more accurate global picture. Latest data suggests that the numbers of those affected are far higher than originally believed. Lack of a diagnosis or even a misdiagnosis leaves individuals with FASD struggling through life not understanding why they are in trouble, why they have difficulty with their peers, coworkers, employers, or their community. The science, the technology and the tools for FASD screening, diagnosis and interventions evolve rapidly, and it is critical to systematically update practice guidelines so that clinical practices are current. Updated guidelines will meet the needs of affected individuals and families better, increase diagnostic capacity in the field, forge stronger alignment and linkages with partners, and ultimately improve health, economic and social outcomes for all Canadians. 30

Backgrounder - Canada Fetal Alcohol Spectrum Disorder Research Network and Revision and Update of the Canadian Guidelines for Diagnosis The Canada FASD Research Network (CanFASD) is leading a new project to update the Canadian guidelines for the diagnosis of Fetal Alcohol Spectrum Disorder (FASD). CanFASD will work with an international expert panel of [doctors, scientists and researchers ] to incorporate the latest knowledge, technology and expertise to develop guidelines that will , for the first time ever, provide recommendations for health professionals in Canada and around the world to diagnose children, youth and adults. What is the Canada FASD Research Network? The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is a formally and informally connected group of professionals from a range of research sciences, and located across Canada. It is Canadas first comprehensive national Fetal Alcohol Spectrum Disorder (FASD) research network and has been in operation since 2005. CanFASD was created as a main focus of a continuing government alliance of the four western provinces and three northern territories called the Canada Northwest FASD Partnership (CNFASDP). This Partnership has been working together since 1998 towards the development and promotion of an interjurisdictional approach to diagnosis, prevention, intervention and care and support of individuals who are affected by FASD. After 8 years of increasingly successful and high profile operation, CanFASD is now a national Canadian charitable organization whose vision is to support Canada's leadership in addressing the extraordinary complexities of FASD. Its mission is 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 FASD. CanFASD creates, nurtures, and sustains a collaborative environment and unique partnership able to bring together many scientific viewpoints to address FASD, with a focus on ensuring that research knowledge is translated to community and policy action. It works through four cross-jurisdictional research teams that are focused on the areas of diagnosis, intervention and prevention and connects researchers, graduate students and practitioners from communities and institutions across Canada and internationally. Working in partnership across the country, CanFASD is collaborating with other national entities concerned with FASD, including the Public Health Agency of Canada (PHAC) and NeuroDevNet. PHAC is the Government of Canada agency responsible for public health in Canada and funds a number of programs and activities related to FASD. NeuroDevNet is a Canadian Network of Centres of Excellence

(NCE), dedicated to helping children overcome neurodevelopmental disorders. CanFASD researchers are taking part in most of the FASD research projects across Canada. Our researchers currently lead 25 major projects related to FASD prevention, intervention and diagnostics. Who funds the Canada FASD Research Network? CanFASD is funded in part by the CNFASDP, as well as by external research grants. In 2012, CanFASD research teams generated over $3.8M in external funding for research projects. Why is research on FASD important? FASD is recognized as a significant issue in Canada. It is currently the leading known cause of developmental disability in Canada and has life-long impacts. Governments are working to measure prevalence and to determine the most effective intervention and prevention programs. Every year, millions of dollars are spent in an attempt to improve outcomes for affected individuals and their families. However, we do not have a clear understanding of the most effective supports nor the capacity required to deliver cost-effective, accessible and sustainable prevention, intervention and diagnostic services. By working with researchers, partners, parents and caregivers, program and service delivery staff, communities, bureaucrats, and political leaders, the research evidence generated by CanFASD can help answer questions that are meaningful about the prevention, diagnosis and treatment of FASD and help set the foundation for the development of increasingly effective programs and policy development. Who is the Executive Director of CanFASD? Dr. Jocelynn Cook is the Executive Director of the Canada FASD Research Network. Dr. Cook has a long history in the field of FASD, in both an academic and a federal program and policy context. She received a Bachelor of Science degree (Honours Biology) from Bishops University and then a PhD in Physiology from the Medical University of South Carolina. Dr. Cook studied the effects of alcohol consumption on preterm birth for her postdoctoral fellowship at the University of Alberta. She also completed an MBA, with a focus on Economics and Health Policy, from the University of Saskatchewan. Dr. Cook has held a number of leadership positions, including Chief Science Advisor for Assisted Human Reproduction Canada and Executive Director of the Canadian Institutes of Health Researchs Strategy for Patient-Oriented Research. She is a past member of the Substance Abuse and Mental Health Commissions FASD Expert Advisory Committee, the National Institute of Healths Expert Advisory Committee on Terminology related to FAS and the Centers for Disease Control and Preventions FAS Task Force. Dr. Cook also holds an adjunct professor appointment in the Department of Obstetrics and Gynecology at the University of Ottawa. Who is the Scientific Director of CanFASD? Dr. Sterling Clarren is a Clinical Professor, with the Division of Developmental Pediatrics, Department of Pediatrics, at the University of British Columbia, and an Investigator with Developmental Neurosciences

and Child Health, Child & Family Research Institute. He is also a Clinical Professor of Pediatrics at the University of Washington. Dr. Clarren received his BA from Yale University and his MD from the University of Minnesota Medical School. He then completed pediatric residency training at the University of Washington School of Medicine before going on to do fellowships in Biosciences, Dysmorphology, and Congenital Defects at the University of Washington School of Medicine. He was on the faculty at the University of Washington as the Robert A. Aldrich Professor of Pediatrics until the fall of 2004 when he assumed the lead of the Research Network. Who are the Leads of our Research Teams? Sterling Clarren, MD, FAAP, Scientic Director, Canada FASD Research Network; Lead, CanFASD Network Action Team: Research in Diagnostics, Vancouver, British Columbia Jacqueline Pei, PhD, Rpsych, Psychologist, Assistant Professor, University of Alberta; Lead, CanFASD Network Action Team: Intervention on FASD, Edmonton, Alberta Nancy Poole, MA, Researcher, British Columbia Centre of Excellence for Womens Health; Lead, CanFASD Network Action Team on Prevention: From a Womens Health Determinants Perspective, Victoria, British Columbia Linda Burnside, PhD, Lead, CanFASD Research Network Action Team on Prevention: Evaluation of FASD Mentoring Programs, Winnipeg Manitoba Who are the Board of Directors? The Board of Directors of CanFASD consists of experts in the field of FASD, and they include: Ms. Audrey McFarlane, Executive Director, Lakeland Centre for FASD Mr. Jim Brookes, Business Development and Stakeholder Management, NeuroDevNet Ms. Lisa Brownstone, Occupational Therapist - Ranch Ehrlo Society Ms. Michelle Dubik, Executive Director, Manitoba Family Services and Consumer Affairs, Government of Manitoba Mr. Tim Moorhouse, Assistant Deputy Minister, Alberta Tourism, Parks and Recreation Ex-officio Members Ms. Ginny Lane, Cognitive Disabilities Consultant, Government of Saskatchewan Ms. Stacy Taylor, Health Consultant, New Brunswick Department of Health Who are the CNFASDP Ministers? Alberta - Honourable Dave Hancock, Minister of Human Services

British Columbia - Honourable Stephanie Cadieux, Minister of Children and Family Development Manitoba - Honourable Kevin Chief, Minister of Children and Youth Opportunities and Minister, Responsible for Healthy Child Manitoba Northwest Territories - Honourable Tom Beaulieu, Minister of Health and Social Services Nunavut - Honourable Keith Peterson, Minister of Health and Social Services Saskatchewan - Honourable June Draude, Minister of Social Services Yukon - Honourable Doug Graham, Minister of Health and Social Services

FASD Fact Sheet The first published literature that linked prenatal alcohol use with birth defects was in France, in 1968, by Dr. Paul Lemoine. In 1973, researchers at the University of Washington published their findings regarding a group of children who shared uncommon physical features and developmental delay. These children all had mothers who had consumed alcohol in pregnancy. The term Fetal Alcohol Syndrome (FAS) was created to describe the patterns observed in these children. Today, Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term that describes the range of effects that can occur in an individual who was prenatally exposed to alcohol, and includes FAS. These effects can include lifelong physical, mental, behavioural difficulties, and learning disabilities. Depending on the amount and the timing of alcohol exposure, a minority of infants exposed will also develop a characteristic pattern of facial features, and some will have a growth deficiency. However, those effects are relatively rare and have little impact on day-to-day function. Decades ago, the facial features of FAS received a lot of attention in the press. The presence or absence of facial features depends on whether alcohol was consumed in a very narrow window of time during pregnancy. It does NOT reflect the degree of brain disorder. The vast majority of people with FASD are not visibly different; you cannot see FASD. Although in a very small percentage of people the face may look different, the important fact is that in all individuals with FASD, the function of the brain is permanently affected. Alcohol exposure during pregnancy results in changes to the developing brain at neurochemical and structural levels. Often, these changes are not detected until a child reaches early or middle school-age when difficulties at school and at home become increasingly problematic. These challenges can include problems in social communication and attention, motor and sensory problems, memory, and difficulty learning from consequences. As an individual grows, they are also at increased risk for depression, anxiety and other mental health conditions. Scientific evidence has conclusively shown that alcohol consumption during pregnancy can cause fetal harm. There is insufficient scientific evidence to define any threshold for safe low-level drinking during pregnancy or when planning to become pregnant. The life-long damage to the brain is the most common and serious result from prenatal exposure to alcohol and can occur at any time during a pregnancy. The safest choice for a woman who is pregnant or planning to become pregnant is not to drink alcohol. A common misconception is that FASD is associated with social, ethnic or cultural background. However, the majority of Canadian women drink alcohol. In a 2004 Canadian Addictions survey, 76.8% of women over 15 years of age reported drinking alcohol within the previous 12-month period. Approximately one half of all pregnancies are unintended. The highest rates of unintended pregnancy occur in women aged 15 19 years of age, which is also a population at increased risk for binge drinking. There are currently no confirmed statistics on the number of people in Canada who have FASD, yet, prenatal alcohol exposure is considered the most common known cause of developmental disability in

the western world. Over the years, prevalence rates in the United States have been reported as 1-3 per 1000 live births for the specific diagnosis of FAS, but as high as 1% or even higher for the full spectrum. The latest research on prevalence, conducted in several countries, indicates that these rates are believed to be as high as 5 out of every 100 live births. The indirect and direct costs for supportive needs in health, mental health, social services, and education and negative costs through criminality and criminal justice are estimated to be $4B/year. Unlike most other birth defects, the diagnosis of FASD is not straightforward. Medical signs are difficult to recognize in newborns, infants and young children. Diagnosis can be delayed or missed entirely, as most of the damage caused by alcohol use during pregnancy cannot be easily quantified until problems arise. Problems caused by prenatal alcohol exposure may not be noticed until children are in school or until the teenage years because this is when those affected by FASD often have significant difficulty meeting societal expectations. FASD is challenging to detect and the diagnostic process relies on an inter-disciplinary team approach. Diagnostic services are not widely available across Canada, especially in rural and remote areas. Many families are reluctant to seek a confirmed diagnosis due to the stigma of addiction. No two people with FASD will have the same challenges due to the wide variation of alcohol effects on brain development. They are at increased risk for mental health issues, school difficulty, addictions, and difficulties maintaining employment. Some of the more commonly seen challenges include: Executive functioning difficulty with judging, planning, delaying gratification, consequences, organization, impulsivity, memory Communication can be highly verbal, but lack comprehension skills both written and verbal Neuromotor Defects impaired balance and coordination Sensory Deficits pain, touch, heat, light

If the above are not appropriately understood and addressed, individuals with FASD are at increased risk for early school failure, involvement with the law, family disruption and homelessness. Our understanding of FASD is in a period of rapid expansion and change. We are beginning to understand the extent of the global impact of this lifelong disability. Research, and the answers it may provide, is critical for moving this field forward, changing the way we view this brain based disability and lessening its impact on individuals, families and society.

References Lemoine P, Harousseau H, Borteyru JP, Menuet JC. Les enfants de parents alcooliques - anomalies observes: propos de 127 cas. Ouest Med 1968; 21: 476-82. Jones KL, Smith DW. 1073. Recognition of the fetal alcohol syndrome in early infancy. Lancet 2:9991001. Jones KL, Smith DW, Ulleland CN, et al. 1973. Pattern of malformation in offspring of chronic alcoholic mothers. Lancet 1:1267-1271. . Journal of Obstetrics and Gynaecology Canada. Alcohol Use and Pregnancy Consensus Clinical Guidelines, Volume 32, Number 8. August 2010. Canadian Addictions Survey (CAS): a national survey of Canadians use of alcohol and other drugs: prevalence of use and related harms: highlights. Ottawa: Health and Welfare Canada 2004. Centers for Disease Control and Prevention, Fetal alcohol syndrome Alaska, Arizona, Colorado and New York 1995 1997. MMWR Morb. Mortal. Wkly Rep. 514, 433-435 (2002). May PA, Gossage JP. Estimating the prevalence of fetal alcohol syndrome, a summary. Alcohol Res. Health 25(3), 159-167 (2001). Sampson, PD, Streissguth AP, Bookstein F., et., al. Incidence of FAS and prevalence of ARND. Teratology 56, 317-326 (1997). May PA, Gossage JP, Kalberg WO et al. Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Dev. Disabil. Res. Rev. 15, 176192 (2009).