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12th Annual Fetal Alcohol Canadian Expertise (FACE) Research Roundtable

Tuesday, September 13, 2011, Prince Edward Island

Welcome and a Message from the Government of Prince Edward Island Gideon Koren, MD, FRCPC, Director, Motherisk Program, The Hospital for Sick Children Sharon Cameron, Deputy Minister, Community Services, Seniors and Labour

About the speakers:

Gideon Koren, MD, FRCPC is the founder and director of the Motherisk Program and professor of Paediatrics, Pharmacology, Pharmacy, and Medical Genetics at the University of Toronto. He is also the Richard and Jean Ivey Chair in Molecular Toxicology in the Schulich School of Medicine, at The University of Western Ontario, where he holds the rank of professor in Medicine and Paediatrics. Author of 1,300 peer review scientific papers and editor of over a dozen medical books, Dr. Koren conducts research on drug safety, the molecular mechanisms and clinical effects of adverse drug and chemical reactions, with focus on pregnancy and children. He has received numerous national and international awards. In 2000 Dr. Koren established the FACE (Fetal Alcohol Canadian Expertise) Research Network and in 2002 he created the peer review medical journal, Fetal Alcohol Research.

Sharon Cameron was appointed as Deputy Minister of Social Services and Seniors in July 2007. Most recently, Ms. Cameron served as principal at Stonepark Intermediate School in Charlottetown, a position she held since 2003. She served as vice-principal at that school from 2001 to 2003 and held the same position from 1999 to 2001 at Tracadie Cross Consolidated School, where she also taught and provided counselling services. Ms. Cameron was employed as the youth services coordinator with the Department of Education from 1997 to 1999 where she coordinated and provided administration to five alternative education programs across the province.

Understanding the Epidemiology of FASD: The Role of Meconium Testing Stuart MacLeod, MD, PhD, FRCPC

Synopsis: Dr. MacLeod presents the results of a symposium conducted by the Canadian Association of Pediatric Hospitals and Health Centres (CAPHC) on meconium testing as a population based approach to understanding the incidence of FASD in Canada. The use of meconium testing has been validated at The Hospital for Sick Children and has been tested on a population basis in Grey-Bruce County in Ontario. Following careful review, meconium testing was featured in the CAPHC FASD toolkit released in 2010. A second Canadian population study is presently underway in Prince Edward Island with support from the Public Health Agency of Canada. Dr. MacLeod discusses the strengths and limitations of meconium testing as a tool for use in epidemiologic surveillance.

About the Speaker: Since January 2003, Stuart M MacLeod, MD, PhD, FRCPC, has been Vice President Research for the BC Provincial Health Services Authority and Professor, Pediatrics, Faculty of Medicine, University of British Columbia. Previously, he spent 14 years at the University of Toronto and The Hospital for Sick Children (pharmacology, pharmacy, medicine, and pediatrics) and was Dean of the Faculty of Health Sciences, McMaster University 1987-1992. His research interests are paediatric clinical pharmacology, adverse drug reactions, drug policy, optimal drug use for children, global health, and medical education.

Legal and Ethical Issues in Diagnosis of FASD Bernard M. Dickens, OC, PhD, LLD, FRSC

Synopsis: In Canadian law, pregnant women are held to owe no enforceable duties of care to their children before birth. However, health care providers may be responsible, to children and their mothers, to warn pregnant women of reasonably foreseeable and preventable harms to their unborn children. Meconium testing at birth in hospitals, and at births elsewhere where feasible, may become part of the standard of care owed to newborn children if treatments are found beneficial to children's development. Mothers' consent may not be legally required for meconium testing. Testing of newborn children that identifies the health status or behaviour of their mothers has raised ethical concerns in the context of HIV infection. Tests that show FASD may not have comparable implications, but raise similar ethical concerns for instance of prior notification of pregnant women, and confidentiality.

About the Speaker: Bernard M. Dickens, LLB, LLM, PhD (Law-Criminology), LLD (Medical Jurisprudence) (London), LLD (Sherbrooke, h.c.) a member of the English Bar and the Ontario Bar, is Professor Emeritus of Health Law and Policy in the Faculty of Law, the Faculty of Medicine, and the Joint Centre for Bioethics at the University of Toronto. He is Departmental Editor for Ethics of the American Journal of Public Health, legal articles co-editor of the Journal of Law, Medicine and Ethics, co-editor of ethical and legal issues of the International Journal of Gynecology and Obstetrics, and a member of editorial boards of several journals including the American Journal of Law & Medicine, and Medicine and Law. He has been a member of the Board of Governors of the American Society of Law, Medicine and Ethics, and is a former Society President. He also chairs the Ethics Advisory Committee of the Public Health Agency of Canada. He is a Fellow of the Royal Society of Canada and an Officer of the Order of Canada.

PEI Meconium Study: Prevalence of Prenatal Alcohol Exposure on Prince Edward Island Janet Bryanton, RN, PHD; Kathy Bigsby, MD.

Synopsis: This presentation provides an overview of the PEI Meconium Study and progress to date. It includes a summary of the research objectives and methodology used; an overview of the process used to educate staff about the study; discussion of innovative strategies used to enhance and maintain buy-in from staff on the participating units; and progress report and summary of lessons learned. Co-investigators: Mary Jean McCarthy, UPEI School of Nursing; Diane Boswall, PEI Reproductive Care Program; Joey Gareri, Motherisk Laboratory; Bonnie Fraser, Queen Elizabeth Hospital; Dr. Bridget Freeman, Prince County Hospital; Donna Walsh, Prince County Hospital; Research Assistants: Hara Kempton Gallant, Margaret Barrett, Sharon Stone.

About the Speakers:

Janet Bryanton, RN, PhD is an associate professor in nursing at UPEI where she teaches Nursing Research, Nursing of Childbearing Families, and a clinical course in maternity nursing. Her research program is focused on perinatal health promotion including prenatal psychosocial assessment, FASD prevention, breastfeeding, women's perceptions of their birth experience, early parenting, and family-centered care. She is currently the Co-Principal Investigator of the PEI Meconium Study.

Kathy Bigsby MD, FRCPC has been consulting pediatrician at Queen Elizabeth Hospital in Charlottetown, PEI since 1995. Dr. Bigsby graduated from the University of Saskatchewan and practiced as a family doctor in Saskatchewan prior to pediatric training. Following residency, she joined the Dept. of Pediatrics at the University of Saskatchewan. Dr. Bigsby came east for a change of scenery and exciting general pediatric practice. She became interested in FASD in Saskatchewan, where the pattern of presentation is quite different from what has have seen in PEI.

FASD Screening and Diagnosing in a Male Federal Penitentiary Patricia MacPherson, M.Sc

Synopsis: This presentation discusses the results of a research study on screening and diagnosing FASD in a sample of incarcerated adult male federal offenders. A new screening tool, the FASD Brief Screen Checklist was developed by the Addictions Research Centre of Correctional Service Canada and was piloted during this study. A brief overview of the methodology is provided. The performance of the screening tool is discussed, and the characteristics and criminal history of male offenders diagnosed with an FASD are described. Current projects including an FASD screening and prevalence research study in a women's correctional facility are also discussed.

About the speaker: Patricia MacPherson is a senior research manager with the Addictions Research Centre, Correctional Service Canada. She received her BA in psychology from the University of PEI, and received her Masters degree in neuroscience from the University of Calgary. Patricia is a member of the Atlantic Intergovernmental FASD Partnership and the PEI Provincial FASD Advisory Group. She is also a board member of the John Howard Society of PEI. Since 2004, Patricia has been the lead for CSC's research on FASD and has contributed evidence-based information toward the development of policy and services for this unique population of offenders.

Can Diet and Exercise Really Benefit the FASD Brain? Brian Christie, PhD

Synopsis: FASD causes significant deficits in learning and memory processes. In animal models of FASD, these deficits can be studied in terms of the ability of the brain to improve certain functions, such as the capacity of neurons to communicate with one another. This feature is called brain plasticity. Dr. Brian Christie sets the stage for the afternoon discussion of FASD intervention research, by describing the biological mechanisms for learning and memory. His discussion of recent animal studies demonstrates the capacity of the brain to create new cells and alter its structural components. He also describes new research into synaptic plasticity in a brain structure that is critical for the formation of memories.

About the Speaker: Brian R. Christie, PhD is an associate professor in the Division of Medical Sciences (University of Victoria) and the Island Medical Program (University of British Columbia). He is affiliated with Department of Cellular and Physiological Sciences and The Brain Research Centre at the University of British Columbia, and the director of the University of Victoria's new neuroscience program. Dr. Christie's numerous academic achievements include awards from NSERC, Alcoholic Beverage Medical Research Foundation, Fragile-X Canada, the Scottish Rite Charitable Foundation, NeuroDevNet and CIHR, He has also received a BMO Young Investigator Award; the Knox Master Teaching Award; and is currently a Michael Smith Foundation for Health Research Senior Scholar. His research focus' on how developmental disorders and the aging process alter learning and memory processes in the brain. His current work seeks to elucidate how diet and exercise can impact the developing, and the aging, brain.

Behavioural Interventions for FASD: The Promise - The Challenges Joanne Rovet, PhD

Synopsis: It is well established that maternal drinking leads to a host of cognitive, behavioural, and social problems in a child prenatally exposed to alcohol. Furthermore, these problems are associated with later mental health issues and trouble with the law as adults. A seminal study by Streissguth and associates, however, showed these later disturbances were partially ameliorated by providing affected children with intervention at an early age. Unfortunately, few effective empirically validated therapies currently exist for this population, in part because these have failed to deal with the key core deficits most needing intervention. Dr. Rovet reviews the interventions so far studied in children with fetal alcohol spectrum disorders as well as in animal models of prenatal alcohol effects. She also discusses why an intervention aimed at improving children's self-regulation skills known as Alert may be ideal for children with FASD and describes the approach taken in evaluating the effects of this therapy at both brain and behavioural levels.

About the Speaker: Joanne F. Rovet, PhD is a professor of paediatrics and psychology at the University of Toronto and a senior scientist in the Neuroscience and Mental Health Program at The Hospital for Sick Children. She obtained her PhD from the University of Toronto and is a registered neuropsychologist in the province of Ontario. Along with Dr. Koren, Dr. Rovet co-founded the Motherisk Clinic at SickKids for the diagnosis of fetal alcohol spectrum disorders. Dr. Rovet's primary areas of research involve children exposed to early insufficiencies of thyroid hormone due to congenital hypothyroidism and maternal hypothyroidism and children with fetal alcohol spectrum disorders. Her research on FASD involves identifying their behavioral phenotype, screening, and using magnetic resonance imaging techniques to identify key their central nervous system abnormalities. Her current work involves examining brain and behavioural changes in children with FASD following self-regulation training. She was awarded the Dewan Award from the Ontario Mental Health Foundation for her research on mental health. She currently holds grants from the Canadian Institute of Health Research and the Canadian Foundation for Fetal Alcohol Research and has published over 150 articles, critical reviews and book chapters.

Improving Executive Functioning in Children With FASD: Measuring Brain and Behavioural Outcomes Sara Stevens, PhD candidate

Synposis: Executive funcioning and self regulatory deficits are well documented in children with Fetal Alcohol Spectrum Disorders (FASD) and have recently been identified as key targets for intervention. The present study goes beyond current research in the field by: (a) evaluating the outcome of a manualized intervention which aims to improve self regulation; (b) using standardized, as well as process-oriented and qualitative outcome measures for in-depth examination of key outcome variables not captured by standardized measures alone; and (c) representing the first attempt to examine the effects of self regulation therapy on the neuroplasticity of executive functioning in children with FASD. Results revealed positive treatment effects in multiple domains of functioning, including evidence of neuroplasticity.

About the Speaker: Sara Stevens is currently entering the last year of her PhD program in the Psychology Department at the University of Toronto. Her research interests lie in understanding social cognitive processing in children with fetal alcohol spectrum disorders (FASD), with particular interest in social skills and emotional understanding. Her doctoral research focuses on evaluating the social cognitive mechanisms, including face processing and theory of mind, that underlie the social and behavioural difficulties commonly observed in children with FASD. Sara is the recipient of the Natural Sciences and Engineering Research Council of Canada Graduate Scholarship and the Canadian Foundation on Fetal Alcohol Research (CFFAR) Graduate Studentship. Sara is also the primary investigator of a CFFAR grant award.

Cognitive Training for Children With FASD Roxana Vernescu, PhD

Synopsis: Attention and executive functioning difficulties are the most commonly observed behaviours in children with FASDs, from basic sustained attention to more complex cognitive processes. Primary deficits in cognitive processing place children at much greater risk of developing secondary disabilities of an academic, behavioural, or interpersonal nature. Research for specific cognitive processes is promising and may help prevent secondary disabilities. Dr. Vernescu reviews intervention research for training attention and more complex executive functioning in children with FASDs.

About the Speaker: Roxana Vernescu, PhD completed her doctorate in developmental psychology at Memorial University, focusing on intervention research for children with FASDs. She has held leadership roles in the health/social services sector including Program Manager, Intervention Services (Eastern Health); Director, Program Development and Outcomes (CHEO); and most recently Senior Manager, Quality, Research, & Evaluation (The Family Help Network). Currently, she serves as Vice-Chair Pro-tem on the Board of Governors for Nipissing University and continues FASD research as an Adjunct Professor in the Department of Psychology at Memorial.

FASD Follow-up in Schools to Improve Child Life Outcomes Dorothy Schwab, Gal Koren

Synopsis: The Manitoba FASD Clinic and the Motherisk Program have collaborated to establish optimal supports for their patients in the form of follow-up programs that focus on making the clinical diagnosis more meaningful in the community context. It has long been understood that education is a protective factor for all children, and those with FASD are no different in that regard. Children affected with FASD have the ability to succeed with the right supports. This presentation highlights specific aspects of the Manitoba-Ontario collaboration that have led to vastly improved services for Motherisk patients (based on the expertise of Manitoba clinicians), and a continuing partnership between the two clinics highlighted by gains for their respective populations.

About the Speakers:

Dorothy Schwab, BOT; OT Reg. (MB) is an Occupational Therapist working as the FASD Educator/Follow-up Worker at the Manitoba FASD Centre in Winnipeg. In this capacity she provides short term follow-up, planning and intervention for individuals diagnosed through the Manitoba FASD Centre. She has over 15 years of experience working in the field of FASD. Until recently she was employed through School Therapy Services and was involved in setting up and working as a consultant in several of the classrooms for students with FASD in the Winnipeg School Division. These are environmentally adapted, low enrollment classrooms in the inner city of Winnipeg designed specifically for teaching students with FASD. Dorothy has written "Reframing Perceptions: How Children with FAS/E Sense the World" in the book entitled, Living or Working with FAS/E, published by the Interagency FASD Program, Winnipeg.

Gal Koren is the follow-up coordinator, community educator and needs assessment lead for the Motherisk FASD Clinic at The Hospital for Sick Children. His academic background is in early childhood development and psychology, and he is currently working towards his MSW. His application for a specialized classroom for FASD at the Toronto District School Board was recently accepted, he was the lead on Ontario's first FASD resource for educators, and he is a member of numerous organizations representing FASD affected children and families. Much of his work in the past year has focused on knowledge translation from clinical to educational contexts.

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